tag:theconversation.com,2011:/au/topics/health-data-7969/articlesHealth data – The Conversation2024-03-21T05:48:21Ztag:theconversation.com,2011:article/2263032024-03-21T05:48:21Z2024-03-21T05:48:21ZAttempts to access Kate Middleton’s medical records are no surprise. Such breaches are all too common<p>The <a href="https://www.abc.net.au/news/2024-03-20/claim-hospital-staff-tried-to-access-kate-middleton-health-info/103608066">alleged</a> data breach involving Catherine, Princess of Wales tells us something about health privacy. If hospital staff can apparently access a future queen’s medical records without authorisation, it can happen to you. </p>
<p>Indeed it may have already happened to you, given many breaches of health data go under the radar.</p>
<p>Here’s why breaches of health data keep on happening.</p>
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Read more:
<a href="https://theconversation.com/yes-kate-middletons-photo-was-doctored-but-so-are-a-lot-of-images-we-see-today-225553">Yes, Kate Middleton's photo was doctored. But so are a lot of images we see today</a>
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<h2>What did we learn this week?</h2>
<p>Details of the alleged data breaches, by <a href="https://www.mirror.co.uk/news/royals/breaking-kate-middleton-three-london-32401247">up to three staff</a> at The London Clinic, emerged in the UK media this week. These breaches are alleged to have occurred after the princess had abdominal surgery at the private hospital earlier this year.</p>
<p>The UK Information Commissioner’s Office <a href="https://ico.org.uk/about-the-ico/media-centre/news-and-blogs/2024/03/ico-statement-in-response-to-reports-of-data-breach-at-the-london-clinic/">is investigating</a>. Its report should provide some clarity about what medical data was improperly accessed, in what form and by whom. But it is unlikely to identify whether this data was given to a third party, such as a media organisation.</p>
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Read more:
<a href="https://theconversation.com/after-the-medicare-breach-we-should-be-cautious-about-moving-our-health-records-online-80472">After the Medicare breach, we should be cautious about moving our health records online</a>
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<h2>Health data isn’t always as secure as we’d hope</h2>
<p>Medical records are inherently sensitive, providing insights about individuals and often about biological relatives.</p>
<p>In an ideal world, only the “right people” would have access to these records. These are people who “need to know” that information and are aware of the responsibility of accessing it.</p>
<p>Best practice digital health systems typically try to restrict overall access to databases through hack-resistant firewalls. They also try to limit access to specific types of data through grades of access.</p>
<p>This means a hospital accountant, nurse or cleaner does not get to see everything. Such systems also incorporate blocks or alarms where there is potential abuse, such as unauthorised copying.</p>
<p>But in practice each health records ecosystem – in GP and specialist suites, pathology labs, research labs, hospitals – is less robust, often with fewer safeguards and weaker supervision.</p>
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Read more:
<a href="https://theconversation.com/vaccination-status-when-your-medical-information-is-private-and-when-its-not-168846">Vaccination status – when your medical information is private and when it's not</a>
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<h2>This has happened before</h2>
<p>Large health-care providers and insurers, including major hospitals or chains of hospitals, have a <a href="https://www.theguardian.com/australia-news/2023/dec/22/st-vincents-health-australia-hack-cyberattack-data-stolen-hospital-aged-care-what-to-do">worrying</a> <a href="https://www.afr.com/technology/medical-information-leaked-in-nsw-health-hack-20210608-p57z7k">history</a> of <a href="https://www.innovationaus.com/oaic-takes-pathology-company-to-court-over-data-breach/">digital breaches</a>. </p>
<p>Those breaches include hackers accessing the records of millions of people. The <a href="https://www.theguardian.com/world/2022/nov/11/medical-data-hacked-from-10m-australians-begins-to-appear-on-dark-web">Medibank</a> data breach involved more than ten million people. The <a href="https://www.hipaajournal.com/healthcare-data-breach-statistics/">Anthem</a> data breach in the United States involved more than 78 million people.</p>
<p>Hospitals and clinics have also had breaches specific to a particular individual. Many of those breaches involved unauthorised sighting (and often copying) of hardcopy or digital files, for example by nurses, clinicians and administrative staff. </p>
<p>For instance, this has happened to public figures such as <a href="https://www.latimes.com/archives/la-xpm-2008-mar-15-me-britney15-story.html">singer</a> <a href="https://journals.lww.com/healthcaremanagerjournal/abstract/2009/01000/health_information_privacy__why_trust_matters.11.aspx">Britney Spears</a>, actor <a href="https://www.nytimes.com/2007/10/10/nyregion/10clooney.html">George Clooney</a> and former United Kingdom prime minister <a href="https://www.theguardian.com/uk-news/2024/mar/20/when-fame-and-medical-privacy-clash-kate-and-other-crises-of-confidentiality">Gordon Brown</a>.</p>
<p>Indeed, the Princess of Wales has had her medical privacy breached before, in 2012, while in hospital pregnant with her first child. This was no high-tech hacking of health data.</p>
<p>Hoax callers from an Australian radio station <a href="https://theconversation.com/did-2day-fm-break-the-law-and-does-it-matter-11250">tricked</a> hospital staff into divulging details over the phone of the then Duchess of Cambridge’s health care.</p>
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Read more:
<a href="https://theconversation.com/did-2day-fm-break-the-law-and-does-it-matter-11250">Did 2Day FM break the law? And does it matter?</a>
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<h2>Tip of the iceberg</h2>
<p>Some unauthorised access to medical information goes undetected or is indeed undetectable unless there is an employment dispute or media involvement. Some is identified by colleagues.</p>
<p>Records about your health <em>might</em> have been improperly sighted by someone in the health system. But you are rarely in a position to evaluate the data management of a clinic, hospital, health department or pathology lab. </p>
<p>So we have to trust people do the right thing.</p>
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Read more:
<a href="https://theconversation.com/what-is-hipaa-5-questions-answered-about-the-medical-privacy-law-that-protects-trumps-test-results-and-yours-147805">What is HIPAA? 5 questions answered about the medical privacy law that protects Trump's test results and yours</a>
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<h2>How could we improve things?</h2>
<p>Health professions have long emphasised the need to protect these records. For instance, medical ethics bodies <a href="https://www.bmj.com/content/350/bmj.h2255">condemn</a> medical students who <a href="https://www.abc.net.au/news/2014-04-14/picture-sharing-app-for-doctors-raises-privacy-concerns/5389226">share</a> intimate or otherwise inappropriate images of patients. </p>
<p>Different countries have various approaches to protecting who has access to medical records and under what circumstances.</p>
<p>In Australia, for instance, we have a mix of complex and inconsistent laws that vary across jurisdictions, some covering privacy in general, others specific to health data. There isn’t one comprehensive law and set of standards <a href="https://theconversation.com/governments-privacy-review-has-some-strong-recommendations-now-we-really-need-action-200079">vigorously administered</a> by one well-resourced watchdog.</p>
<p>In Australia, it’s mandatory to report <a href="https://www.oaic.gov.au/privacy/notifiable-data-breaches">data breaches</a>, including breaches of health data. This reporting system is currently <a href="https://theconversation.com/governments-privacy-review-has-some-strong-recommendations-now-we-really-need-action-200079">being updated</a>. But this won’t necessarily prevent data breaches.</p>
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Read more:
<a href="https://theconversation.com/governments-privacy-review-has-some-strong-recommendations-now-we-really-need-action-200079">Government's privacy review has some strong recommendations – now we really need action</a>
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<p>Instead, we need to incentivise Australian organisations to improve how they handle sensitive health data.</p>
<p>The best policy <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1475-4932.12693">nudges</a> involve increasing penalties for breaches. This is so organisations act as responsible custodians rather than negligent owners of health data.</p>
<p>We also need to step-up enforcement of data breaches and make it easier for victims to sue for breaches of privacy – princesses and tradies alike.</p>
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Read more:
<a href="https://theconversation.com/wheres-kate-speculation-about-the-missing-princess-is-proof-the-palaces-media-playbook-needs-a-re-write-225562">Where’s Kate? Speculation about the 'missing' princess is proof the Palace’s media playbook needs a re-write</a>
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<p class="fine-print"><em><span>Dr Arnold spent several years as the Australian representative on OECD Health Informatics working parties. He is a former director of the Australian Privacy Foundation</span></em></p>If it can happen to a future queen, it can happen to you. Maybe it already has.Bruce Baer Arnold, Associate Professor, School of Law, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2104432023-07-28T20:43:27Z2023-07-28T20:43:27ZInquiry must assess how Canada’s fragmented COVID-19 response lost the public’s trust<figure><img src="https://images.theconversation.com/files/540004/original/file-20230728-27977-61wdf5.jpg?ixlib=rb-1.1.0&rect=835%2C1108%2C4109%2C2798&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It is clear that some public trust in public health, science and government has been lost in Canada and around the world.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/inquiry-must-assess-how-canadas-fragmented-covid-19-response-lost-the-publics-trust" width="100%" height="400"></iframe>
<p>Over the course of the pandemic, <a href="https://health-infobase.canada.ca/covid-19/current-situation.html?stat=num&measure=deaths_total&map=pt#a2">more than 53,000 Canadians died</a> and nearly five million contracted COVID-19. </p>
<p>While Canada had lower numbers of cases and deaths and higher vaccination rates <a href="https://doi.org/10.1503/cmaj.220316">than most other G10 countries</a>, these successes mask inequities across communities, socio-economic conditions and demography. They also hide challenges in data sharing and loss of public trust over time, evidenced by the “<a href="https://www.publicsafety.gc.ca/cnt/trnsprnc/brfng-mtrls/prlmntry-bndrs/20221013/04-en.aspx">freedom convoy</a>” movement that occupied Canada’s capital, Ottawa, in early 2022.</p>
<p>These and other challenges are laid out in <a href="https://www.bmj.com/canada-covid-series">a series of articles published in the <em>British Medical Journal</em> (<em>BMJ</em>) on July 24</a>, that we co-authored with other clinical, research and public health experts across Canada. Now is the time to learn from the COVID-19 response through an action-oriented, independent inquiry focused on implementation and accountability.</p>
<h2>Loss of public trust</h2>
<p>Canada’s public health response was hampered by fragmentation in decision-making, <a href="https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care-system/canada.html#a4">shared between federal and provincial/territorial</a> and sometimes municipal governments. The Public Health Agency of Canada, <a href="https://www.canada.ca/en/public-health/corporate/mandate/about-agency/history.html">which was created in the wake of the first SARS outbreak in 2003</a>, develops national clinical and public health guidelines while provincial and territorial health agencies make decisions for their individual jurisdictions.</p>
<p>In the absence of a co-ordinated planning and delivery authority, different public health measures were implemented in different locales. For example, measures like vaccine eligibility and mandates, masking and school closures varied among provinces.</p>
<p>The rationale and supporting evidence for these different approaches were unclear. Some variations addressed local risk factors as evidence evolved, but <a href="https://doi.org/10.1136/bmj-2023-075665">insufficient availability and sharing of data and analyses</a> — combined with a lack of transparency — made it hard to explain the variation to the public. Over time, this led to a loss of confidence in public health guidance.</p>
<h2>Fragmented data</h2>
<p>Part of the problem is outdated data infrastructure that isn’t able to support public health decision-making in real time. Health information systems lack integration and interoperability between data sources, even after <a href="https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-01-charting-path-toward-ambition.html">$130 million of investment over the past eight years</a>. </p>
<p>However, other problems are legal and cultural. Canada’s health data privacy and protection laws, developed before the era of big data applications, <a href="https://nccph.s3.amazonaws.com/uploads/2022/06/OCPHO_Report_David_Buckeridge_NCCMT_EN.pdf">create legal impediments to using and analyzing data across jurisdictions</a>. </p>
<p>These impediments were exacerbated by a culture of risk aversion among the custodians of data in different jurisdictions and organizations. This culture requires a shift from a safeguarding mindset to one of stewardship for public good.</p>
<p>Technological advances mean data no longer need to be pooled across jurisdictions. <a href="https://nccph.s3.amazonaws.com/uploads/2022/06/OCPHO_Report_David_Buckeridge_NCCMT_EN.pdf">Data need never leave their secure data environments</a>; instead, de-identified data may be accessed and analyzed across independent systems using federated data structures. Unfortunately, these structures were not in place at the start of the pandemic and have not been implemented over the past three years. </p>
<p>Improved data access also presumes that data are fit for purpose, and that was not the case. <a href="https://www2.gov.bc.ca/assets/gov/public-safety-and-emergency-services/emergency-preparedness-response-recovery/embc/reports/covid-19_lessons_learned_report.pdf">Comparisons between jurisdictions were difficult</a> for several reasons, including policy differences in testing eligibility, types of tests, how test results were reported and how hospitalizations or deaths were attributed to COVID-19.</p>
<p>Over the course of the pandemic, most jurisdictions reported COVID-19 case numbers, but data about demographics or location were <a href="https://www2.gov.bc.ca/assets/gov/public-safety-and-emergency-services/emergency-preparedness-response-recovery/embc/reports/covid-19_lessons_learned_report.pdf">withheld due to privacy concerns</a>. This lack of nuanced data left people with a lack of understanding of their personal or community-level risk factors. The lack of ability to make informed decisions contributed to <a href="https://doi.org/10.1139/facets-2021-0018">loss of public trust over time</a>.</p>
<p>Even worse, the initial pandemic response was ill-designed to address the socio-economic and structural inequities that led to disproportionate burdens of the pandemic. </p>
<h2>Health inequities</h2>
<p><a href="https://www.toronto.ca/community-people/health-wellness-care/health-programs-advice/respiratory-viruses/covid-19/covid-19-pandemic-data/covid-19-archived-dashboards/covid-19-ethno-racial-identity-income/">Highest rates of COVID-19</a> cases and deaths were among racialized people, recent immigrants, lower-wage essential workers and those living in higher density and multigenerational households. </p>
<p>Case rates were highest where high-density living intersected with high-density working conditions, and were amplified by barriers to testing, vaccination and ability to isolate. <a href="https://doi.org/10.1093/ofid/ofac690">This trend did not resolve over the successive waves of the pandemic</a>.</p>
<p>Health data that include not only locale, but also racial identity, occupations, household size and income can help unpack social determinants of infection and health outcomes, and can be used to tailor public health programs. However, the collection of such data give rise to responsibilities to reduce inequalities, not just describe them. </p>
<p>Sadly, decisions to collect such data can be politicized. Ontario only <a href="https://www.theglobeandmail.com/canada/article-ontario-mulls-collection-of-race-based-covid-19-data-some-argue-its-2/">collected relevant data</a> after pressure from community activists and Québec resisted similar community pressure to <a href="https://www.theguardian.com/world/2023/jul/25/canada-could-have-saved-more-lives-covid-crisis">collect race-based data</a>.</p>
<p><a href="https://doi.org/10.1136/bmj-2023-075666">Canada’s diversity was also not adequately represented at decision-making or advisory tables</a>, nor was it represented in research that generated evidence for the public health response. </p>
<p>Public health decisions involve health, social and economic tradeoffs that need to be informed not only by standard epidemiological data, but also by social science data. These data can illuminate the <a href="https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1">social determinants of health</a>, the spread of misinformation and disinformation and political factors, such as the rise in social unrest due to public health measures. Evidence generation needs to be inclusive of diverse voices, specifically from those communities that bore the greatest burden of the pandemic.</p>
<h2>Public inquiry and reforms</h2>
<p>It is clear that some public trust in public health, science and government has been lost in Canada and around the world. This does not bode well for future threats, such as emerging pandemics, and current threats from the opioid crisis and climate change.</p>
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Read more:
<a href="https://theconversation.com/let-evidence-not-opinion-guide-harm-reduction-policy-and-practice-in-canadas-drug-poisoning-crisis-207679">Let evidence, not opinion, guide harm reduction policy and practice in Canada's drug poisoning crisis</a>
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<p>For these reasons, we call for a different kind of inquiry, agreeing that another expert report packed with recommendations will gather dust and not serve to rebuild public trust. </p>
<p>We need political will to call an independent inquiry that is inclusive of a diversity of voices, accountable to communities and with a mandate to implement change. Reforms to data generation, access and use are essential in preparing for the next public health emergency.</p><img src="https://counter.theconversation.com/content/210443/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tania Bubela receives funding from the Canadian tri-councils, Genome Canada, Genome British Columbia, Brain Canada, ALS Canada, and other philanthropic and government funders. She sits on the boards of Canadian Science Publishing and The Institute for Health System Transformation and Sustainability. With respect to COVID-19 work: she received funding from Genome Canada to conduct COVID-19 research on return to campus/work practices and served on the BC COVID-19 strategic research advisory committee, the executive governance group for the COVID-19 Clinical Research Coordination Initiative, and the Royal Society of Canada COVID-19 Task Force. </span></em></p><p class="fine-print"><em><span>Kimberlyn McGrail receives funding from the Canadian Institutes of Health Research. </span></em></p><p class="fine-print"><em><span>Sharmistha Mishra does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Now is the time to learn from the COVID-19 response through an action-oriented independent inquiry focused on accountability. Reforms to data generation, access and use are essential.Tania Bubela, Professor and Dean of the Faculty of Health Sciences, Simon Fraser UniversityKimberlyn McGrail, Professor of Health Services and Policy Research, University of British ColumbiaSharmistha Mishra, Associate Professor of Medicine, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1995082023-03-02T19:08:43Z2023-03-02T19:08:43ZMy Health Record is meant to empower patients – but with little useful information stored, is it worth saving?<figure><img src="https://images.theconversation.com/files/512831/original/file-20230301-20-2q0zn.jpg?ixlib=rb-1.1.0&rect=52%2C22%2C4940%2C3300&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-using-modern-computer-medical-record-777148693">Shutterstock</a></span></figcaption></figure><p>Australia’s My Health Record is a national, integrated electronic record, intended to overcome the problem of having personal health information “siloed” in different systems. </p>
<p>People can access their own My Health Record via <a href="https://www.healthdirect.gov.au/my-health-record#access">MyGov</a> or an <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/manage-your-record/view-my-health-record-using-an-app">app</a>. Any of their treating health professionals can access it, too. </p>
<p>My Health Record can hold various past information, including a shared health summary, records of health conditions, allergies and medications, <a href="https://www.pulseit.news/australian-digital-health/episoft-provides-cancer-treatment-cycle-summaries-on-my-health-record">summaries of cancer treatment</a>, test and scan results, hospital discharge notes, vaccination records, <a href="https://developer.digitalhealth.gov.au/products/australian-organ-donor-register">organ donation choices</a>, and notes entered by patients themselves. </p>
<p>But is the system actually being used? Why is it, when people access their My Health Record, they often find little helpful information? Earlier this year, Health Minister Mark Butler <a href="https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/strengthening-medicare-for-the-future">promised an overhaul</a> as part of the Strengthening Medicare Taskforce. But what needs to happen for it to be finally fit for purpose? </p>
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Read more:
<a href="https://theconversation.com/medicare-reform-is-off-to-a-promising-start-now-comes-the-hard-part-197914">Medicare reform is off to a promising start. Now comes the hard part</a>
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<h2>How many My Health Records are there?</h2>
<p>More than 90% of Australians – <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">over 23.5 million people</a> – have a My Health Record. The rate of uptake has <a href="https://www.anao.gov.au/work/performance-audit/implementation-the-my-health-record-system">not changed much since the opt-out period ended</a>. </p>
<p>My Health Record has operated for more than ten years, undergoing a controversial change to an <a href="https://theconversation.com/opt-out-period-for-my-health-record-extended-106935">opt-out</a> system in 2018–19. The federal government has <a href="https://www.theguardian.com/australia-news/2022/jun/06/my-health-record-after-12-years-and-more-than-2bn-hardly-anyone-is-using-digital-service">invested heavily in My Health Record</a> and given <a href="https://www.servicesaustralia.gov.au/ehealth-incentives-for-practice-incentives-program?context=23046">financial incentives to general practices</a> to use it. <a href="https://mumbrella.com.au/australian-digital-health-agency-reveals-my-health-record-marketing-spend-details-530286">Large-scale communication campaigns</a> have tried to inform and educate people about it too.</p>
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Read more:
<a href="https://theconversation.com/vaccination-status-when-your-medical-information-is-private-and-when-its-not-168846">Vaccination status – when your medical information is private and when it's not</a>
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<h2>What’s in them?</h2>
<p>The <a href="https://www.digitalhealth.gov.au/">Digital Health Agency</a>, which manages the My Health Record system, reports a vast number of documents have been uploaded to it: <a href="https://www.transparency.gov.au/annual-reports/australian-digital-health-agency/reporting-year/2021-22-9">some 4 billion documents by June 2022</a>. </p>
<p>Over <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">98% of My Health Record</a> profiles have <em>something</em> in them. </p>
<p>The Digital Health Agency’s <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">monthly reports</a> reveal that in January there were 355 million clinical documents in the My Health Record system – mainly pathology reports, but also diagnostic imaging reports, hospital discharge summaries, shared health summaries and other things. There were 494 million prescription and dispense records that had been uploaded by providers such as pharmacists and GPs. </p>
<p>This seems promising. But two things are important. </p>
<p>First, these numbers are only a small fraction of the health reports and summaries that are being generated in Australia. For instance, the health minister recently said that only <a href="https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/minister-for-health-and-aged-care-press-conference-3-february-2023">20% of diagnostic imaging reports</a> are uploaded to My Health Record. Images themselves cannot be uploaded. </p>
<p>Second, the large majority of what’s in My Health Record is simply Medicare and Pharmaceutical Benefits Scheme (PBS) data – <a href="https://www.transparency.gov.au/annual-reports/australian-digital-health-agency/reporting-year/2021-22-9">some 2 billion and 1 billion documents, respectively</a> (as of July 2022). </p>
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Read more:
<a href="https://theconversation.com/using-my-health-record-data-for-research-could-save-lives-but-we-must-ensure-its-ethical-100757">Using My Health Record data for research could save lives, but we must ensure it's ethical</a>
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<h2>How handy is this information?</h2>
<p>The usefulness of this information to patients and clinicians is limited. Medicare data contains virtually no clinically relevant information. It only provides the date of a clinic visit or a test, a brief description (such as “consultation at consulting rooms” or “iron studies”), and the provider name. This information might help a patient remember – or a provider to track – the timing of certain health events, but little else. </p>
<p>PBS prescription information in My Health Record is a little more useful – providing medicines names and doses, dates of prescription and supply, and the number of tablets and repeats. This could assist in the often-touted situation of patients attending a new doctor or the emergency department without a list of their medications. </p>
<p>Information from the Australian Immunisation Register and the Organ Donor Register is also automatically deposited in the My Health Record. Still, this type of information is fairly basic, and available <a href="https://www.servicesaustralia.gov.au/medicare-online-account">elsewhere</a>. It might not meet consumers’ expectations of their “health record”. </p>
<h2>Who is using the My Health Record?</h2>
<p>Nearly all <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">GPs, pharmacies and public hospitals</a> in Australia are connected and “have used My Health Record”, according to the Digital Health Agency. But again, the devil is in the detail. </p>
<p>Use by specialists is still very low, with only <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">32% registered to access the system</a>. Allied health is virtually <a href="https://www.theguardian.com/australia-news/2023/feb/03/an-improved-my-health-record-will-be-at-centre-of-push-to-modernise-primary-healthcare">absent</a>. </p>
<p><a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">Fewer than one in four people</a> viewed their My Health Record in 2022. Less than 10% of the pathology reports in the system were viewed by consumers. </p>
<p>While usage in some health sectors is rising, even public hospitals tapped little of the system’s potential, viewing <a href="https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics">fewer than 2.8 million documents</a> uploaded by another organisation, in the 12 months to January 2023. This is a tiny proportion of the My Health Record’s contents. The vast majority of documents have probably never been viewed (and even less, used), by health-care professionals or patients.</p>
<p>One of the most common arguments in favour of an integrated electronic health record is in the context of patients presenting to emergency departments. There, the ability to quickly understand a patient’s health problems, medications and recent test results could be vital. So, recent research on the use of My Health Record in emergency departments is especially telling. </p>
<p>The Australian Commission on Safety and Quality in Health Care <a href="https://www.safetyandquality.gov.au/our-work/e-health-safety/my-health-record-emergency-departments-project">analysed</a> use of My Health Record by more than 1,000 emergency department staff for 130,000 patients across four sites nationwide, in 2019. The Commission found low staff awareness of the system. My Health Record was viewed in less than 1% of emergency department presentations. And in one-third of the presentations studied, the person had an empty My Health Record.</p>
<p>A <a href="https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/s12911-022-01920-8">2021 survey</a> of a major Melbourne hospital found My Health Record “has not been adopted as routine practice in the emergency department” by most clinicians. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ive-given-out-my-medicare-number-how-worried-should-i-be-about-the-latest-optus-data-breach-191575">I've given out my Medicare number. How worried should I be about the latest Optus data breach?</a>
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</em>
</p>
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<h2>So, is it worth saving?</h2>
<p>Consumer advocates hoped the arrival of My Health Record would <a href="http://chf.org.au/introduction-my-health-record-webinar-series/basics-my-health-record">empower consumers</a>. </p>
<p>But a <a href="https://www.theguardian.com/australia-news/2022/jun/06/my-health-record-after-12-years-and-more-than-2bn-hardly-anyone-is-using-digital-service">frustrating lack of useful content</a>, not enough <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7747035/">usable consumer resources</a>, <a href="https://www.publish.csiro.au/py/PY20169">low understanding of the system</a>, and privacy and security concerns have all contributed to a sense of missed opportunity. </p>
<p>The <a href="https://www.health.gov.au/resources/publications/strengthening-medicare-taskforce-report?language=en">Strengthening Medicare Taskforce</a> recommendations to modernise the platform could increase the information the system holds and make it easier to use. </p>
<p>But it will need investment and technical improvements to develop it beyond the “<a href="https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/minister-for-health-and-aged-care-press-conference-3-february-2023">outdated, clunky, pdf format</a>” described by the health minister last month.</p><img src="https://counter.theconversation.com/content/199508/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Megan Prictor does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Some 90% of Australians have a My Health Record. But even if it has health information stored on there, it might be less than informative and rarely referred to.Megan Prictor, Senior Lecturer in Law, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1991862023-02-07T01:45:18Z2023-02-07T01:45:18ZThe cancer gap between First Nations and non-Indigenous people is widening – but better data could help<figure><img src="https://images.theconversation.com/files/508285/original/file-20230206-13-g1khbo.jpg?ixlib=rb-1.1.0&rect=41%2C98%2C5395%2C3671&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://media.gettyimages.com/id/959597978/photo/man-working-at-home.jpg?s=1024x1024&w=gi&k=20&c=OMrTB8eY1mE_pj-cJdLM1D0Ce8rNQEokhBo0dDRyxbA=">Getty/Marianne Purdie</a></span></figcaption></figure><p>Cancer figures provide stark evidence of the gap between the health of Aboriginal and Torres Strait Islander people and non-Indigenous people in Australia. The difference is confronting – and it’s increasing over time. </p>
<p>Cancer is the leading broad <a href="https://www.indigenoushpf.gov.au/measures/1-08-cancer">cause of death</a> for Aboriginal and Torres Strait Islander people, accounting for 3,612 deaths (23% of deaths). Indigenous Australians are <a href="https://www.aihw.gov.au/reports/cancer/cancer-in-australia-2021/summary">14% more likely</a> to be diagnosed with cancer. They are 20% less likely to survive at least five years beyond diagnosis. </p>
<p>While the likelihood of dying from cancer in the general population declined by 10% from 2010 to 2019, it <a href="https://www.indigenoushpf.gov.au/measures/1-08-cancer">increased</a> by 12% for Aboriginal and Torres Strait Islander people.</p>
<p>These figures highlight major challenges for the federal government’s stated aim to <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/BriefingBook44p/ClosingGap">close the life expectancy gap</a> in a generation. But data will also be critical to meeting this goal.</p>
<h2>Accurate and relevant data</h2>
<p>There continues to be limited visibility in the needs of Aboriginal and Torres Strait Islander people with cancer.</p>
<p>The recent <a href="https://www.worldcancerday.org/">World Cancer Day</a>, with its theme to “Close the care gap”, comes at a pivotal moment in our nation’s history, with momentum building towards a Voice to Parliament. </p>
<p><a href="https://ulurustatement.org/our-story/makarrata/">Makarrata</a> – treaty or agreement-making – has the potential to have a profound and positive impact on the health and healing of Aboriginal and Torres Strait Islander communities. At both the federal and state levels, the dialogue, yarning and truth-telling arising from this process acknowledges the history and trauma of dispossession, and its impact on generations of Aboriginal and Torres Strait Islander people.</p>
<p>Much of this discussion is embedded in the need for constitutional recognition of Aboriginal and Torres Strait Islander peoples’ unique and enduring cultures, and better supporting leadership in their own affairs.</p>
<p>Viewing these aspirations through the <a href="https://www.cdc.gov/cancer/health-equity/racism-health-disparities.htm">prism of cancer care</a> reveals a complex array of barriers to recognition and leadership. Systemic racism and limitations in appropriate, culturally safe health-care services continue to negatively impact Aboriginal and Torres Strait Islander peoples’ experiences and outcomes. </p>
<p>Aboriginal and Torres Strait Islander people experience limited access to health services within Western systems, as well as discrimination within those systems. This results in a <a href="https://equityhealthj.biomedcentral.com/articles/10.1186/1475-9276-12-47">lack of trust</a> when dealing with governments and service providers.</p>
<p>Part of the solution will be gaining a more accurate picture of cancer outcomes. While statistics tell us the proportion of Aboriginal and Torres Strait Islander people with cancer who die is increasing, the reality is likely far worse. <a href="https://doi.org/10.1186/s12874-020-01152-2">Research shows</a> Aboriginal and Torres Strait Islander cancer reporting is underestimated. One reason is the lack of identification of Aboriginal and Torres Strait Islander people in official health data.</p>
<p>A New South Wales study found 16% of Aboriginal and Torres Strait Islander people were <a href="https://doi.org/10.1186/s12874-020-01152-2">not reported</a> on official hospital admissions data. There is a range of reasons for this, including whether or not services ask the required <a href="https://www.aihw.gov.au/getmedia/502680f6-b179-42fa-be71-8fd5d793d8d8/indigenous-identification-DLbrochure.pdf.aspx#:%7E:text='Are%20you%20%5Bis%20the%20person,exactly%20as%20it%20is%20worded.">Standard Indigenous Question</a> and the propensity or <a href="https://doi.org/10.3233/SJI-180491">willingness</a> for Aboriginal and Torres Strait Islander people to identify in the services they attend.</p>
<p>There have been a <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1753-6405.12114">range of efforts</a> to improve Aboriginal and Torres Strait Islander identification within the data, including linking multiple official data sources. But this is still yet to be appropriately implemented by governments.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="people getting chemo treatment" src="https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/508286/original/file-20230206-25-ilmot5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Patients may not be asked whether they are Indigenous – or be unwilling to share this information on hospital admission.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cancer-patients-receiving-chemotherapy-treatment-hospital-529109200">Shutterstock</a></span>
</figcaption>
</figure>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-first-indigenous-covid-death-reminds-us-of-the-outsized-risk-nsw-communities-face-166888">The first Indigenous COVID death reminds us of the outsized risk NSW communities face</a>
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</em>
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<h2>Tracking everyone’s cancer experiences</h2>
<p>Appropriate measures that reflect the experiences and needs of Aboriginal and Torres Strait Islander people with cancer are desperately needed. </p>
<p>There have been some <a href="https://doi.org/10.1186/s12913-018-3780-8">promising developments</a> in this area, including the <a href="https://www.mdpi.com/1660-4601/18/12/6193">What Matters 2 Adults</a> study, which identifies factors important to the wellbeing of Aboriginal and Torres Strait Islander people. There’s also been work to measure the <a href="https://pxjournal.org/journal/vol8/iss2/9/">cancer care experiences</a> of Aboriginal and Torres Strait Islander people. But these tools are not used routinely in health-care services, which limits culturally relevant assessment of patients to improve their care. </p>
<p>Bridging the care gap requires health and cancer care services to provide culturally competent and safe health-care systems.</p>
<p>There have been some notable developments since the <a href="https://link.springer.com/article/10.1023/A:1023064400004">first review</a> into Aboriginal and Torres Strait Islander cancer research and reporting in 2003. These include Cancer Council Australia convening the first ever round table on Aboriginal and Torres Strait Islander cancer in 2004, followed by the first <a href="https://www.lowitja.org.au/page/research/research-categories/health-policy-and-systems/aboriginal-and-torres-strait-islander-leadership/completed-projects/a-national-approach-to-improving-cancer-outcomes">national round table</a> on Priorities for Aboriginal and Torres Strait Islander Cancer Research in 2010.</p>
<p>The latter brought together leading experts, Aboriginal and Torres Strait Islander cancer survivors and community members, and representatives from Aboriginal and Torres Strait Islander-controlled organisations.</p>
<p>At the policy level, the <a href="https://www.cancer.org.au/assets/pdf/optimal-care-pathway-for-aboriginal-and-torres-strait-islander-people-with-cancer#:%7E:text=For%20Aboriginal%20and%20Torres%20Strait%20Islander%20people%2C%20optimal%20patient%2Dcentred,about%20treatment%20and%20ongoing%20care">Optimal Care Pathways for Aboriginal and Torres Strait Islanders</a> was released in 2018 along with an implementation plan in 2020. </p>
<p>The ongoing development of the <a href="https://engage.australiancancerplan.gov.au/#:%7E:text=The%20Australian%20Cancer%20Plan%20is,all%20Australians%20affected%20by%20cancer.">Australian Cancer Plan</a> by Cancer Australia is informed by the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control. The National Aboriginal Community Controlled Organisation is also developing a national cancer plan, and there are state and territory plans in development to better support the community-controlled sector.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1622418919213654017"}"></div></p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/aboriginal-people-near-the-ranger-uranium-mine-suffered-more-stillbirths-and-cancer-we-dont-know-why-164862">Aboriginal people near the Ranger uranium mine suffered more stillbirths and cancer. We don't know why</a>
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</em>
</p>
<hr>
<h2>Embedding equity</h2>
<p>If we are going to change the trend and close the cancer care gap, we need to embed equity as a core element within health systems and services. This will ensure appropriate resources are allocated to identify Aboriginal and Torres Strait Islander people in the data, as well as developing measures important to their cancer care. </p>
<p>We need to work to better understand and eliminate the barriers and challenges Aboriginal and Torres Strait Islander people face. We can do this through supporting Aboriginal and Torres Strait Islander voices and leadership in research, education and health.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-are-cancer-clusters-24623">Explainer: what are cancer clusters?</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/199186/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kalinda Griffiths receives funding from the National Health and Medical Research Council and the Australian Research Council. She is also Thinker in Residence at the Australian Health Promotion Association. She is Research and Education Lead, Aboriginal and Torres Strait Islander Health at the Victorian Comprehensive Cancer Centre Alliance. </span></em></p>While statistics tell us the proportion of Aboriginal and Torres Strait Islander people with cancer who die is increasing, the reality is likely worse.Kalinda Griffiths, Scientia lecturer, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1968472023-01-22T13:33:12Z2023-01-22T13:33:12ZHow can health data be used for public benefit? 3 uses that people agree on<figure><img src="https://images.theconversation.com/files/505224/original/file-20230118-11-g3s32x.jpeg?ixlib=rb-1.1.0&rect=118%2C9%2C2929%2C1694&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Support for use of health data is conditional on whether the use has public benefits.</span> <span class="attribution"><span class="source">(Brittany Datchko/Graphic Journeys)</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Health data can include information about health-care services, health status and behaviours, medications and genetic data, in addition to demographic information like age, education and neighbourhood. </p>
<p>These facts and statistics are valuable because they offer insights and information about population health and well-being. However, they can also be sensitive, and there are legitimate public concerns about how these data are used, and by whom. The term “<a href="https://www.hdrn.ca/en/reports/social-licence-uses-health-data-report-public-perspectives">social licence</a>” describes uses of health data that have public support. </p>
<p>Studies performed in <a href="https://doi.org/10.9778/cmajo.20180099">Canada</a>, the <a href="http://dx.doi.org/10.1136/medethics-2014-102374">United Kingdom</a> and <a href="https://doi.org/10.1186/s12910-016-0153-x">internationally</a> have all found public support and social licence for uses of health data that produce public benefits. </p>
<p>However, this support is conditional. Public concerns related to privacy, commercial motives, equity and fairness must be addressed. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Illustration of a health-care practitioner and a patient discussing a list of medications." src="https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=464&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=464&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=464&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=583&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=583&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505278/original/file-20230119-20-m9gj43.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=583&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Public support for use of health data is conditional on things like public benefits, attention to privacy and fairness.</span>
<span class="attribution"><span class="source">(Brittany Datchko/Graphic Journeys)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Our team of health policy researchers set out to build upon prior studies with actionable advice from a group of 20 experienced public and patient advisers. Studies have shown that health data use, sharing and reuse is a complex topic. So we recruited people who already had some knowledge of potential uses of health data through their roles advising research institutions, hospitals, community organizations and governments.</p>
<p>We asked these experienced advisers to exchange views about uses of health data that they supported or opposed. We also gathered participants’ views about requirements for social licence, such as privacy, security and transparency.</p>
<h2>Consensus views</h2>
<p>After hours of facilitated discussion and weeks of reflection, all 20 participants agreed on some applications and uses of health data that are within social licence, and some that are not. </p>
<p>Participants agreed it is within social licence for health data to be used by:</p>
<ul>
<li><p>health-care practitioners — to directly improve the health-care decisions and services provided to a patient.</p></li>
<li><p>governments, health-care facilities and health-system administrators — to understand and improve health care and the health-care system.</p></li>
<li><p>university-based researchers — to understand the drivers of disease and well-being.</p></li>
</ul>
<p>Participants agreed that it is not within social licence for:</p>
<ul>
<li><p>an individual or organization to sell (or re-sell) another person’s identified health data.</p></li>
<li><p>health data to be used for a purpose that has no patient, public or societal benefit.</p></li>
</ul>
<h2>Points of disagreement</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man and a woman sitting at a table with a computer screen" src="https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=366&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=366&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=366&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=460&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=460&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505276/original/file-20230119-26-nlgrh6.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=460&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The participants also had different views about what constitutes an essential requirement for social licence.</span>
<span class="attribution"><span class="source">(Brittany Datchko/Graphic Journeys)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Among other topics, the participants discussed uses of health data about systemically marginalized populations and companies using health data. Though some participants saw benefits from both practices, there was not consensus support for either. </p>
<p>For example, participants were concerned that vulnerable populations could be exploited, and that companies would put profit ahead of public benefits. Participants also worried that if harms were done by companies or to marginalized populations, they could not be “undone.” Several participants expressed skepticism about whether risks could be managed, even if additional safeguards are in place. </p>
<p>The participants also had different views about what constitutes an <a href="https://www.hdrn.ca/sites/default/files/2022-11/Appendix%20C%20-%20Social%20licence%20for%20uses%20of%20health%20data%20-%20HDRN%20Canada%20%26%20GRIIS.docx">essential requirement for social licence</a>. This included discussions about benefits, governance, patient consent and involvement, equity, privacy and transparency. </p>
<p>Collectively, they generated a list of 85 essential requirements, but 38 of those requirements were only seen as essential by one person. There were also cases where some participants actively opposed a requirement that another participant thought was essential. </p>
<h2>Using the findings</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman working with data at a desk" src="https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=541&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=541&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=541&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=680&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=680&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505277/original/file-20230119-24-9x1pi1.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=680&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Potential benefits of health data use include better patient care, better health system planning and better understanding of disease and wellness.</span>
<span class="attribution"><span class="source">(Brittany Datchko/Graphic Journeys)</span></span>
</figcaption>
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<p>This work was funded by the Public Health Agency of Canada to inform the <a href="https://www.canada.ca/en/public-health/programs/pan-canadian-health-data-strategy.html">Pan-Canadian Health Data Strategy</a>. In parallel, an <a href="https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-03-toward-world-class-health-data-system.html">expert advisory group for the strategy</a> recommended that one or more public assemblies be established to provide advice and guidance. </p>
<p>We strongly agree with the expert advisory group’s recommendation to “give voice to people” as the Pan-Canadian Health Data Strategy is implemented. </p>
<p>The findings from our work may help focus the work of the Pan-Canadian Health Data Strategy and other initiatives aimed at expanding uses of health data. These initiatives should start by focusing on uses of health data that have clear public support. </p>
<p>We note that there could be many important benefits just from the users of health data that the 20 participants in our project supported: health-care practitioners; governments, health-care facilities and health system administrators; and university-based researchers. These benefits include better patient care, better health system planning, and better understanding of disease and wellness. </p>
<p>Our hope is that the work described in this article will be a step forward in a concerted and continuous effort to identify and act on increasing the uses of health data that members of the public support.</p><img src="https://counter.theconversation.com/content/196847/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>P. Alison Paprica receives funding from the Public Health Agency of Canada and national and provincial research funders.</span></em></p><p class="fine-print"><em><span>Annabelle Cumyn participates in a research program that receives funding from CIHR. She is affiliated with the University of Sherbrooke and is a member on the Interagency advisory panel on research ethics. </span></em></p><p class="fine-print"><em><span>Kimberlyn McGrail receives funding from the Public Health Agency of Canada and national and provincial research funders. </span></em></p><p class="fine-print"><em><span>Julia Burt and Roxanne Dault do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>There are concerns about how health data are used, but research shows support for uses with public benefits by health-care providers, governments, health-system planners and university-based researchers.P. Alison Paprica, Professor (adjunct) and Senior Fellow, Institute for Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of TorontoAnnabelle Cumyn, Professor of Medicine, Université de Sherbrooke Julia Burt, Public Engagement Fellow, Faculty of Medicine, Memorial University of NewfoundlandKimberlyn McGrail, Professor of Health Services and Policy Research, University of British ColumbiaRoxanne Dault, Research coordinator, Groupe de recherche interdisciplinaire en informatique de la santé, Université de Sherbrooke Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1893622023-01-16T11:52:44Z2023-01-16T11:52:44ZFrom a ‘deranged’ provocateur to IBM’s failed AI superproject: the controversial story of how data has transformed healthcare<figure><img src="https://images.theconversation.com/files/503380/original/file-20230106-16-mc22tn.png?ixlib=rb-1.1.0&rect=42%2C47%2C1076%2C845&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">US health data pioneer Ernest Codman at work on his national registry of patient outcomes, 1925.</span> <span class="attribution"><span class="source">Roy Mabrey/Boston Medical Library</span></span></figcaption></figure><p>Just over a decade ago, artificial intelligence (AI) made one of its showier forays into the public’s consciousness when <a href="https://www.nytimes.com/2011/02/17/science/17jeopardy-watson.html?action=click&module=RelatedLinks&pgtype=Article">IBM’s Watson computer</a> appeared on the American quiz show <a href="https://en.wikipedia.org/wiki/Jeopardy!">Jeopardy!</a> The studio audience was made up of IBM employees, and Watson’s exhibition performance against two of the show’s most successful contestants was televised to a national viewership across three evenings. In the end, the machine triumphed comfortably.</p>
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<p><em>You can listen to more articles from The Conversation, narrated by Noa, <a href="https://theconversation.com/us/topics/audio-narrated-99682">here</a>.</em></p>
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<p>One of Watson’s opponents <a href="https://www.jeopardy.com/about/cast/ken-jennings">Ken Jennings</a>, who went on to make a career on the back of his gameshow prowess, showed grace – or was it deference? – in defeat, jotting down this commentary to accompany his final answer: “I, for one, welcome our new computer overlords.”</p>
<p>In fact, his phrase had been poached from another American television mainstay, The Simpsons. Jennings’ wry pop culture reference signalled Watson’s reception less as computer overlord and more as technological curio. But that was not how IBM saw it. On the back of this very public success, in 2011 IBM turned Watson toward one of the most lucrative but untapped industries for AI: healthcare.</p>
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<p>What followed over the next decade was a series of ups and downs – but <a href="https://www.nytimes.com/2021/07/16/technology/what-happened-ibm-watson.html">mostly downs</a> – that exemplified the promise, but also the numerous shortcomings, of applying AI to healthcare. The Watson health odyssey finally ended in 2022 when it was <a href="https://slate.com/technology/2022/01/ibm-watson-health-failure-artificial-intelligence.html">sold off “for parts”</a>.</p>
<p>There is much to learn from this story about why AI and healthcare seemed so well-suited, and why that potential has proved so difficult to realise. But first we need to revisit the controversial origins of data use in this field, long before electronic computers were invented, and meet one of its American pioneers, <a href="https://www.facs.org/about-acs/archives/past-highlights/codmanhighlight/">Ernest Amory Codman</a> – an elite by birth, a surgeon by training, and a provocateur by nature.</p>
<h2>Data’s role in the birth of modern medicine</h2>
<p>While the utility of data in a general way had already been clear for several centuries, its collection and use on a massive scale was a feature of the 19th century. By the 1850s, collecting census data had become commonplace. Its use was not merely descriptive; it formed a way to make determinations about how to govern.</p>
<p>The 19th century marked the first time that, as US systems expert <a href="https://medium.com/@sjtmartin/big-data-a-19th-century-problem-9d58c3e6495b">Shawn Martin</a> explains, “managers felt the need to tie the information that society collected to things like performance [and] productivity”. This applied to public health as well, where “big data” played a critical role in establishing relationships between populations, their habits and environment (both at home and work), and disease.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Old street map of London" src="https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=563&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=563&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=563&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=707&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=707&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503116/original/file-20230104-18-x3rgmh.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=707&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">John Snow’s groundbreaking map of cholera cases in central London, 1854.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Snow-cholera-map-1.jpg">Wikimedia</a></span>
</figcaption>
</figure>
<p>A well-known example is <a href="https://theconversation.com/sewage-alerts-the-long-history-of-using-maps-to-hold-water-companies-to-account-189013">John Snow’s discovery</a> of the source of a cholera outbreak in London’s Soho neighbourhood in 1854. Now considered one of epidemiology’s founding fathers, Snow canvassed door to door asking whether the families within had had cholera. His analysis came chiefly in the re-organisation of the data he collected – its plotting on a map – such that a pattern might emerge. This ultimately established not just the extent of the outbreak but also its source, the <a href="https://lookup.london/john-snow-water-pump/">Broad Street water pump</a>.</p>
<p>For Boston-born Codman, an outspoken medical reformer working at the beginning of the 20th century, such use of data to understand disease was up there as “one of the greatest moments in medicine”.</p>
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<img alt="" src="https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/288776/original/file-20190820-170910-8bv1s7.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p><strong><em>This article is part of Conversation Insights</em></strong>
<br><em>The Insights team generates <a href="https://theconversation.com/uk/topics/insights-series-71218">long-form journalism</a> derived from interdisciplinary research. The team is working with academics from different backgrounds who have been engaged in projects aimed at tackling societal and scientific challenges.</em></p>
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<p>Though Codman was involved in <a href="https://qualitysafety.bmj.com/content/11/1/104">many data-driven reforms</a> during his controversial career, one of the most successful was the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758960/">Registry of Bone Sarcoma</a>, which he established in 1920. His goal was to collect and analyse all of the cases of bone cancer (or suspected bone cancer) from across the US, and to use these to establish diagnostic criteria, therapeutic effectiveness and a standardised nomenclature.</p>
<p>There were a few rules for this registry. Individual doctors who contributed had to send x-rays, case reports and, if possible, tissue samples for examination by the registry’s consulting pathologists and Codman himself. This would ensure both the accuracy and uniformity of pathological analysis. The effort was a success which grew over time: by 1954, when the American College of Surgeons sought a new home for the registry, it contained an impressive 2,400 complete, cross-referenced cases.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man's portrait" src="https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=858&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=858&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=858&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1078&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1078&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503197/original/file-20230105-12-ydlxj6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1078&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Ernest Codman.</span>
<span class="attribution"><a class="source" href="https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101412473-img">National Library of Medicine</a></span>
</figcaption>
</figure>
<p>On the face of it, Codman’s decision to focus on bone cancer was baffling. It was neither a pressing nor a common concern for doctors across the US. But the disease’s relative rarity was one reason he chose it. Codman felt the amount of data received from his nationwide request would not be overwhelming for his small team of researchers to analyse.</p>
<p>Perhaps more importantly, he knew that studying bone cancer would raise the ire of far fewer of his colleagues than a more common disease might. In a clinical atmosphere in which expertise was understood as a combination of long experience with a dash of intuition – the physician’s “art” – Codman’s touting of data as a better way to obtain knowledge about a disease and its treatment was already being met with vociferous opposition.</p>
<p>It didn’t help that he tended to be inflammatory and provocative in the pursuit of his data-driven goals. At a medical meeting in Boston in 1915, he launched a surprise attack on his fellow practitioners. In the middle of this staid affair, Codman unveiled an <a href="https://protomag.com/policy/the-codman-affair/">8ft cartoon</a> lampooning his colleagues for their apathy toward healthcare reform and, as he saw it, their wilful ignorance of the limitations of the profession. As one (former) friend put it in the event’s aftermath, Codman’s only hope was that people would take the “charitable” view and consider him not an enemy of the profession but merely “mentally deranged”.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Satirical cartoon titled The Back Bay Golden Goose Ostrich of an ostrich with head in the sand laying eggs being caught by group of men." src="https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=284&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=284&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=284&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=357&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=357&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503228/original/file-20230105-24-nw1pdg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=357&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Codman’s 8ft cartoon lampooned medical practices in the early 20th century.</span>
<span class="attribution"><a class="source" href="https://ia800807.us.archive.org/1/items/b29812161/b29812161.pdf">From The Shoulder by E.A. Codman</a></span>
</figcaption>
</figure>
<p>Undeterred, Codman continued this pugnacious approach to his pioneering work. In a 1922 letter to the prestigious Boston Medical and Surgical Journal, he complained that the surgeons of Massachusetts had been particularly unhelpful to his registry. He explained that he had – politely – asked the 5,494 physicians in the state to “drop him a postal stating whether or not he knew of a case” so that Codman could acquire “the best statistics ever obtained on the frequency of the disease”. To his chagrin, he had received only 19 responses in nearly two years. Needling the journal’s editors and readers simultaneously, he asked:</p>
<blockquote>
<p>Is this because your Journal is not read? … [Or] because of the indifference of the medical profession as to whether the frequency of bone sarcoma is known or not?</p>
</blockquote>
<p>Codman proposed a questionnaire that would allow the journal to see whether the problem was its lack of readership, or his colleagues’ “inertia, procrastination, disapproval, opposition or disinterest”. A subsequent editorial in response to Codman’s proposal was surprisingly magnanimous:</p>
<blockquote>
<p>Whether we will it or not, we are obliged to be irritated, amused or instructed, according to our temperaments, by Dr Codman. Our advice is to be instructed.</p>
</blockquote>
<h2>An end to elitism?</h2>
<p>Despite the establishment’s resistance, submissions to Codman’s registry began to grow such that by 1924, he had enough material to make preliminary comments about bone cancer. For one thing, he had succeeded in standardising the much-contested matter of the proper nomenclature for the disease. This, he exulted, was so significant that it should be likened to the “rising of the sun”.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Hand-written data diary" src="https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=892&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=892&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=892&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1121&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1121&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503198/original/file-20230105-26-vbjshz.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1121&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Codman made this chart of his own life in data.</span>
<span class="attribution"><a class="source" href="https://ia800807.us.archive.org/1/items/b29812161/b29812161.pdf">From The Shoulder by E.A.Codman</a></span>
</figcaption>
</figure>
<p>The registry also offered up many pieces of “impersonal proof”, as Codman called his data-driven findings, of the rightness of certain theories that individual physicians had promoted. Claims, for example, that combined treatments of “surgery, mixed toxins and radium” were more effective than treatments that relied on any of these alone were borne out by the data.</p>
<p>The registry, as Codman’s colleague <a href="https://en.wikipedia.org/wiki/Joseph_Colt_Bloodgood">Joseph Colt Bloodgood</a> <a href="https://www.nejm.org/doi/full/10.1056/NEJM192911142012003">put it</a>, “excited great interest” among practitioners, and not just because it had “influenced the entire medical world to pay more attention to bone tumours”. More importantly, it provided a new model for how to do medical work. Another admiring colleague responded to Bloodgood: </p>
<blockquote>
<p>The work of the registry [is] one of the outstanding American contributions to surgical pathology. As a method of study, it shows the necessity of very wide experience before a surgeon is capable of handling intelligently cases of this disease … [It] is impossible for any single individual to claim finality of this sort.</p>
</blockquote>
<p>This emphasis on “very wide experience” over the experience of “any single individual” points to another critical reason to prefer data, according to Codman. His goal in changing the method by which medical knowledge was made was not just to get better results. By seeking to undo the image of medicine as an “art” that depended on the wisdom of a select group of preternaturally talented individuals, Codman also threatened to undo the class-ridden reality that underlay this public veneer.</p>
<p>As the efficiency engineer Frank Gilbreth implied in a 1913 article in <a href="https://babel.hathitrust.org/cgi/pt?id=mdp.39015038046010&view=1up&seq=428&q1=Gilbreth">the American Magazine</a>, if it was true that medicine required no specific intrinsic gifts (monetary or otherwise), then absolutely anybody – whatever their class, race or background – could do it, including “bricklayers, shovellers and dock-wallopers” who were currently shut out of such “high-brow” occupations.</p>
<p>Codman was even more pointed. If data was used to evaluate the outcomes of his physician colleagues, he insisted, it would show that the quality of doctors and hospitals was generally poor. He <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758959/">sniped</a> that they excelled chiefly in “making dying men think they are getting better, concealing the gravity of serious diseases, and exaggerating the importance of minor illnesses to suit the occasion”.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Postcard of large, neoclassical, stone building." src="https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=376&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=376&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=376&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=473&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=473&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503240/original/file-20230105-18-glcfyu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=473&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Codman admitted his own social advantages in joining Harvard Medical School.</span>
<span class="attribution"><a class="source" href="https://upload.wikimedia.org/wikipedia/commons/f/fe/Harvard_Medical_School%2C_Boston%2C_Mass_%28NYPL_b12647398-74267%29.tiff">Detroit Publishing Company/Wikimedia</a></span>
</figcaption>
</figure>
<p>“Nepotism, pull and politics” were the order of the day in medicine, Codman wrote in one of his most scathing takedowns of his colleagues at the Massachusetts General Hospital. Yet he made himself the centrepiece of this critique, conceding that his <a href="https://www.shoulderdoc.co.uk/article/907">entrance to Harvard Medical School</a> had come on the back of “friends and relatives among the well-to-do”. The only difference, he suggested, was that he was willing to own up to it, and to subject himself and his work to the scrutiny of data.</p>
<h2>Data’s unflattering view of medicine</h2>
<p>Codman was not the only person having a come-to-Jesus moment with data over this period. In the 1920s, the American social science researchers <a href="https://www.britannica.com/biography/Robert-Lynd-and-Helen-Lynd">Robert and Helen Lynd</a> collected data in the small US town of Muncie, Indiana, as a way of creating a picture of the <a href="https://www.c-span.org/video/?197089-1/the-averaged-american">“averaged American”</a>.</p>
<p>By the 1930s, the similarly-minded <a href="http://www.massobs.org.uk/about/history-of-mo">Mass Observation project</a> took off in Britain, intending to collect data about everyday life so as to create an “anthropology of ourselves”. Crucially, both reflected the thinking that also drove Codman: that the right way to know something – a people, a disease – was to produce what seemed a suitably representative average. And this meant the amalgamation of often quite diverse and wide-ranging characteristics and their compression into a single, standard, efficient unit.</p>
<p>The turn from describing representative averages to learning from these averages is probably best articulated in the work of pollsters, whose door-to-door interrogations were aimed at helping a nation to know itself by statistics. In 1948, inspired by their failure to correctly predict the outcome of the US presidential election – one of the <a href="https://www.latimes.com/archives/la-xpm-1998-nov-01-mn-38174-story.html">most famous psephological errors</a> in the nation’s history – pollsters such as George Gallup and Elmo Roper began to rethink their analytic methods, spinning away from quota sampling and towards random sampling.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Satirical cartoon of Harry Truman looking at poll results showing he will lose election while his opponent says 'What's the use of going through with the election?'" src="https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=575&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=575&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=575&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=723&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=723&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503126/original/file-20230104-130036-m60jcp.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=723&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The 1948 election was one of the most famous psephological errors in US history.</span>
<span class="attribution"><a class="source" href="https://upload.wikimedia.org/wikipedia/commons/0/06/Truman-Dewey-polls-1948.jpg">Clifford K. Berryman/Wikimedia</a></span>
</figcaption>
</figure>
<p>At the same time, thanks primarily to its <a href="https://mitpress.mit.edu/9780262550284/the-closed-world/">military applications</a>, the science of computing began to gather pace. And the growing fascination with knowing the world via data combined with the unparalleled ability of computers to crunch it appeared a match made in heaven.</p>
<p>In a late-in-life <a href="https://archive.org/details/b29812161/page/n7/mode/2up">preface</a> to his 1934 data-driven magnum opus on the anatomy of the shoulder, Codman had comforted himself with the thought that he was a man ahead of his time. And indeed, just a few years after his death in 1940, statistical analysis began to pick up steam in medicine.</p>
<p>Over the next two decades, figures such as <a href="https://en.wikipedia.org/wiki/Ronald_Fisher">Sir Ronald Fisher</a>, the geneticist and statistician remembered for suggesting randomisation as an antidote to bias, and his English compatriot <a href="https://en.wikipedia.org/wiki/Austin_Bradford_Hill">Sir Austin Bradford Hill</a>, who demonstrated the connection between smoking and lung cancer, also pushed forward the integration of statistical analysis into medicine. </p>
<figure class="align-right ">
<img alt="Man's face" src="https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=661&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=661&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=661&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=830&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=830&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503455/original/file-20230106-15-6gv3oj.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=830&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Archie Cochrane.</span>
<span class="attribution"><a class="source" href="https://community.cochrane.org/archie-cochrane-name-behind-cochrane">Cardiff University Library/Cochrane Archive</a></span>
</figcaption>
</figure>
<p>However, it would take many more years for word to finally leak out that, by data’s measure, both the methodologies of medical research and much of medicine itself was ineffective. In a movement led in part by outspoken Scottish epidemiologist <a href="https://en.wikipedia.org/wiki/Archie_Cochrane">Archie Cochrane</a>, this unflattering statistical view of medicine finally really saw the light of day in the 1960s and 70s.</p>
<p>Cochrane went so far as to say that medicine was based on “a level of guesswork” so great that any return to health after a medical intervention was more a “tribute to the sheer survival power of the minds and bodies” of patients than anything else. Aghast at the revelations embedded in Cochrane’s 1972 book, <a href="https://www.nuffieldtrust.org.uk/research/effectiveness-and-efficiency-random-reflections-on-health-services">Random Reflections on Health Services</a>, the Guardian journalist Ann Shearer <a href="https://www.proquest.com/docview/185551386/4D45D85AC6E94604PQ/1?accountid=11862">wrote</a>:</p>
<blockquote>
<p>Isn’t it … more than fair to ask what on Earth we – and more particularly, the medical They – have been doing all these years to let the health machine develop with such a lack of quality control?</p>
</blockquote>
<p>The answer dates back to Codman’s bone cancer registry half a century earlier. The medical establishment on both sides of the Atlantic had been avoiding with all their might the scrutiny that data would bring.</p>
<h2>Computers finally acquire medical currency</h2>
<p>Despite their increasing ubiquity in the 1970s and 80s, computers had still only haltingly joined the medical mainstream. Though a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793587/">smattering of AI applications</a> began to appear in healthcare in the 1970s, it was only in the 1990s that computers really started to acquire some medical currency.</p>
<p>In a page borrowed straight from Codman’s time, the pioneering American biomedical informatician <a href="https://en.wikipedia.org/wiki/Edward_H._Shortliffe">Edward Shortliffe</a> noted in 1993 that the <a href="https://pubmed.ncbi.nlm.nih.gov/8358494/">future of AI in medicine</a> depended on the realisation that “the practice of medicine is inherently an information-management task”.</p>
<p>In the US, the Institute of Medicine and the <a href="https://www.loc.gov/item/lcwaN0016849/">President’s Information Technology Advisory Council</a> released <a href="https://www.ncbi.nlm.nih.gov/books/NBK222268/">reports</a> highlighting the failures of medicine to fully embrace information technology. By 2004, a newly appointed national coordinator for health information technology was <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793587/">charged with</a> the herculean task of establishing an electronic medical record for all Americans by 2014. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man operating early computer" src="https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=436&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=436&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=436&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=548&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=548&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503222/original/file-20230105-26-ii9kzs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=548&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">An IBM System 360 computer in 1969.</span>
<span class="attribution"><a class="source" href="https://upload.wikimedia.org/wikipedia/commons/2/20/1969._IBM_System_360_computer._Automated_Data_Processing_Center._USDA_South_Building%2C_Washington%2C_DC._%2834271384522%29.jpg">USDA Forest Service via Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>This explosion of interest in bringing computers into healthcare made it an enticing and potentially lucrative area for investment. So it is no surprise that IBM celebrated Watson’s winning turn on Jeopardy! in 2011 by putting it to work on an <a href="https://www.nytimes.com/2021/07/16/technology/what-happened-ibm-watson.html">oncology-focused programme</a> with multiple US-based clinical partners selected on the basis of their access to medical data.</p>
<p>The idea was laudable. Watson would do what <a href="https://theconversation.com/uk/topics/machine-learning-algorithms-103181">machine learning algorithms</a> do best: mining the massive amounts of data these institutions had at their disposal, searching for patterns that would help to improve treatment. But the complexity of cancer and the frustratingly unique responses of patients to it, yoked together by data systems that were sometimes incomplete and sometimes incompatible with each other or with machine learning’s methods more generally, limited Watson’s ability to be useful.</p>
<p>One sorry example was Watson’s <a href="https://www.mdanderson.org/publications/annual-report/annual-report-2013/the-oncology-expert-advisor.html">Oncology Expert Advisor</a>, a collaboration with the MD Anderson Cancer Center in Houston, Texas. This had begun its life as a “bedside diagnostic tool” that pored through patient records, scientific literature and doctors’ notes in order to make real-time treatment recommendations. Unfortunately, Watson couldn’t “read” the doctors’ notes. While good at mining the scientific literature, it couldn’t apply these large-scale discussions to the specifics of the individuals in front of it. By 2017, the project had been <a href="https://www.forbes.com/sites/matthewherper/2017/02/19/md-anderson-benches-ibm-watson-in-setback-for-artificial-intelligence-in-medicine/?sh=202871377485">shelved</a>.</p>
<p>Elsewhere, at New York City’s famed Memorial Sloan Kettering Cancer Center, clinicians found a more elaborate – and infinitely more problematic – way forward. Rather than relying on the retrospective data that is machine learning’s usual fodder, clinicians invented <a href="https://gizmodo.com/ibm-watson-reportedly-recommended-cancer-treatments-tha-1827868882">new “synthetic” cases</a> that were, by virtue of having been invented, infinitely less messy and more complete than any real data could be.</p>
<p>The project re-litigated the “data v expertise” debate of Codman’s time – once more in Codman’s favour – since this invented data had built into it the specifics of cancer treatment as understood by a small group of clinicians at a single hospital. Bias, in other words, was programmed directly in, and those engaged in training the system knew it.</p>
<p>Viewing historical patient data as too narrow, they rationalised that replacing this with data that reflected their own collective experience, intuition and judgment could build into Watson For Oncology the latest and greatest treatments. Of course, this didn’t work any better in the early 21st century than it had in the early 20th. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Room-size black box behind glass lit with purple lights" src="https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/503225/original/file-20230105-26-18ivrq.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=505&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">An early prototype of IBM Watson in 2011.</span>
<span class="attribution"><a class="source" href="https://upload.wikimedia.org/wikipedia/commons/2/22/IBM_Watson.PNG">Clockready/Wikimedia</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>Furthermore, while these clinicians sidestepped the problem of real data’s impenetrable messiness, treatment options available at a wealthy hospital in Manhattan were far removed from those available in the other localities that Watson was meant to serve. The contrast was perhaps starkest when Watson was introduced to <a href="https://www.statnews.com/2016/08/19/ibm-watson-cancer-asia/">other parts of the world</a>, only to find the treatment regimens it recommended either didn’t exist or were not in keeping with the local and national infrastructures governing how healthcare was done there.</p>
<p>Even in the US, the consensus, as one unnamed physician in Florida reported back to IBM, was that Watson was a <a href="https://gizmodo.com/ibm-watson-reportedly-recommended-cancer-treatments-tha-1827868882">“piece of shit”</a>. Most of the time, it either told clinicians what they already knew or offered up advice that was incompatible with local conditions or the specifics of a patient’s illness. At best, it offered up a snapshot of the views of a select few clinicians at a moment in time, now reified as “facts” that ought to apply uniformly and everywhere they went.</p>
<p>Many of the elegies written to mark Watson’s selling-off in 2022, having failed to make good on its promise in healthcare, attributed its downfall to the same kind of overpromise and under-delivery that has spelled the end for many health technology start-ups.</p>
<p>Some maintained that the scaling-up of Watson from gameshow savant to oncological wunderkind might have been successful with more time. Perhaps. But in 2011, time was of the essence. To capitalise on the goodwill toward Watson and IBM that Jeopardy! had created, to be the trailblazer into the lucrative but technologically backward world of healthcare, had meant striking first and fast.</p>
<p>Watson’s high-profile failure highlights an overlooked barrier to modern, data-driven healthcare. In its encounters with real, human patients, Watson stirred up the same anxieties that Codman had encountered – difficult questions about what it is exactly that medicine produces: care, and the human touch that comes with it; or cure, and the information management tasks that play a critical role here?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ai-can-excel-at-medical-diagnosis-but-the-harder-task-is-to-win-hearts-and-minds-first-63782">AI can excel at medical diagnosis, but the harder task is to win hearts and minds first</a>
</strong>
</em>
</p>
<hr>
<p>A <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2791851?resultClick=1">2019 study</a> of US patient perspectives of AI’s role in healthcare gave these concerns some statistical shape. Though some felt optimistic about AI’s potential to improve healthcare, a vast majority gave voice to fundamental misgivings about relinquishing medicine to machine learning algorithms that could not explain the logic they employed to reach their diagnosis. Surely the absence of a physician’s judgment would increase the risk of misdiagnosis?</p>
<p>The persistence of this worry has quite often resulted in caveating the work of machine learning with reassurances that humans are still in charge. In a 2020 <a href="https://news.microsoft.com/en-gb/2020/12/09/a-microsoft-ai-tool-is-helping-to-speed-up-cancer-treatment-and-addenbrookes-will-be-the-first-hospital-in-the-world-to-use-it/">report</a> on the InnerEye project, for example, which used retrospective data to identify tumours on patient scans, Yvonne Rimmer, a clinical oncologist at Addenbrooke’s Hospital in Cambridge, addressed this concern:</p>
<blockquote>
<p>It’s important for patients to know that the AI is helping me in my professional role. It’s not replacing me in the process. I doublecheck everything the AI does, and can change it if I need to.</p>
</blockquote>
<h2>Data’s uncertain role in the future of healthcare</h2>
<p>Today, whether a doctor gives you your diagnosis or you get it from a computer, that diagnosis is not primarily based on the intuition, judgment or experience of either doctor or patient. It’s driven by data that has made our cultures of mainstream care relatively more uniform and of a higher standard. Just as Codman foresaw, the introduction of data in medicine has also forced a greater degree of transparency, both in terms of methodologies and effectiveness.</p>
<p>However, the more important – and potentially intractable – problem with this modern approach to health is its lack of representation. As the Sloan Kettering dalliance with Watson began to show, datasets are not the “impersonal proofs” that Codman took them to be.</p>
<p>Even under less egregiously subjective conditions, data undeniably replicates and concretises the biases of society itself. As MIT computer scientist Marzyeh Ghassemi explains, data offers the “<a href="https://news.mit.edu/2022/marzyeh-ghassemi-explores-downside-machine-learning-health-care-0201">sheen of objectivity</a>” while replicating the ethnic, racial, gender and age biases of institutionalised medicine. Thus the tools, tests and techniques that are based on this data are also not impartial. </p>
<p>Ghassemi highlights the inaccuracy of pulse oximeters, often calibrated on light-skinned individuals, for those with darker skin. Others might note the outcry over the <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30510-0/fulltext">gender bias in cardiology</a>, spelled out especially in higher mortality rates for women who have heart attacks. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/C22JlzHlLJQ?wmode=transparent&start=8" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The landmark human genome announcement in 2000.</span></figcaption>
</figure>
<p>The list goes on and on. Remember the human genome project, that big data triumph which has, according to the US National Institutes of Health <a href="https://www.genome.gov/human-genome-project">website</a>, “accelerated the study of human biology and improved the practice of medicine”? It almost exclusively drew upon genetic studies of white Europeans. According to <a href="https://precisionmedicine.ucsf.edu/%E2%80%9Cwicked-problem%E2%80%9D-racism-and-race-precision-medicine">Esteban Burchard</a> at the University of California, San Francisco: </p>
<blockquote>
<p>96% of genetic studies have been done on people with European origin, even though Europeans make up less than 12% of the world’s population … The human genome project should have been called the European genome project.</p>
</blockquote>
<p>A lack of representative data has implications for big data projects across the board – not least for <a href="https://www.fda.gov/medical-devices/in-vitro-diagnostics/precision-medicine">precision medicine</a>, which is widely touted as the antidote to the problems of impersonal, algorithm-driven healthcare.</p>
<p>Precision or “personalised” medicine seeks to address one of the essential perceived drawbacks of data-based medicine by locating finer-grained commonalities between smaller and smaller subsets of the population. By focusing on data at a genetic and cellular level, it may yet counter the criticism that the data-driven approach of recent decades is too blunt and insensitive a tool, such that “even the most frequently prescribed drugs for the most common conditions have very limited efficacy”, according to computational biologist <a href="https://www.jstor.org/stable/26601761#metadata_info_tab_contents">Chloe-Agathe Azencott</a>. </p>
<p>But personalised medicine still feeds on the same depersonalised data as medicine more generally, so it too is handicapped by data’s biases. And even if it could step beyond the problems of biased data – <a href="https://theconversation.com/extent-of-institutional-racism-in-british-universities-revealed-through-hidden-stories-118097">and, indeed, institutions</a> – the question of its role in the future of our everyday healthcare does not end there.</p>
<p>Even taking the utopian view that personalised medicine might make possible treatments as individual as we are, pharmaceutical companies won’t develop these treatments unless they are profitable. And that requires either prices so high that only the wealthiest of us could afford them, or a market so big that these companies can “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2918032/">achieve the requisite return on investment</a>”. Truly individualised care is not really on the table.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-defence-of-imprecise-medicine-the-benefits-of-routine-treatments-for-common-diseases-128440">In defence of ‘imprecise’ medicine: the benefits of routine treatments for common diseases</a>
</strong>
</em>
</p>
<hr>
<p>If our goal in healthcare is to help more people by being more representative, more inclusive and more attentive to individual difference in the medical everyday of diagnosis and treatment, big data isn’t going to help us out. At least not as things currently stand.</p>
<p>For the story of healthcare data to date has pointed us squarely in the other direction, towards homogenisation and standardisation as medical goals. Laudable as the rationales for such a focus for medicine have been at different moments in our history, our expectations for the potential for machine learning to enable all of us to live longer, healthier lives remain something of a pipe dream. Right now it is still us humans, not our computer overlords, who hold most sway over our individual health outcomes.</p>
<p><em>Dr Caitjan Gainty is a winner of The Conversation’s <a href="https://theconversation.com/sir-paul-curran-award-for-academic-communication-2021-goes-to-caitjan-gainty-175125">Sir Paul Curran award for academic communication</a></em></p>
<hr>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=112&fit=crop&dpr=1 600w, https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=112&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=112&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=140&fit=crop&dpr=1 754w, https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=140&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/313478/original/file-20200204-41481-1n8vco4.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=140&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><em>For you: more from our <a href="https://theconversation.com/uk/topics/insights-series-71218?utm_source=TCUK&utm_medium=linkback&utm_campaign=TCUKengagement&utm_content=InsightsUK">Insights series</a>:</em></p>
<ul>
<li><p><em><a href="https://theconversation.com/the-discovery-of-insulin-a-story-of-monstrous-egos-and-toxic-rivalries-172820?utm_source=TCUK&utm_medium=linkback&utm_campaign=TCUKengagement&utm_content=InsightsUK">The discovery of insulin: a story of monstrous egos and toxic rivalries
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<li><p><em><a href="https://theconversation.com/james-mccune-smith-new-discovery-reveals-how-first-african-american-doctor-fought-for-womens-rights-in-glasgow-166233?utm_source=TCUK&utm_medium=linkback&utm_campaign=TCUKengagement&utm_content=InsightsUK">James McCune Smith: new discovery reveals how first African American doctor fought for women’s rights in Glasgow
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<li><p><em><a href="https://theconversation.com/the-inside-story-of-recovery-how-the-worlds-largest-covid-19-trial-transformed-treatment-and-what-it-could-do-for-other-diseases-184772?utm_source=TCUK&utm_medium=linkback&utm_campaign=TCUKengagement&utm_content=InsightsUK">The inside story of Recovery: how the world’s largest COVID-19 trial transformed treatment – and what it could do for other diseases
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<p><em>To hear about new Insights articles, join the hundreds of thousands of people who value The Conversation’s evidence-based news. <a href="https://theconversation.com/uk/newsletters/the-daily-newsletter-2?utm_source=TCUK&utm_medium=linkback&utm_campaign=TCUKengagement&utm_content=InsightsUK"><strong>Subscribe to our newsletter</strong></a>.</em></p><img src="https://counter.theconversation.com/content/189362/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Caitjan Gainty does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>To understand the potential for machine learning to transform medicine, we must go back to the controversial origins of data use in healthcareCaitjan Gainty, Senior Lecturer in the History of Science, Technology and Medicine, King's College LondonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1898602022-11-17T13:28:13Z2022-11-17T13:28:13ZFlexible AI computer chips promise wearable health monitors that protect privacy<figure><img src="https://images.theconversation.com/files/494521/original/file-20221109-2910-hpmo70.JPG?ixlib=rb-1.1.0&rect=0%2C3%2C1125%2C626&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A device like this could one day monitor and assess your health.</span> <span class="attribution"><span class="source">Sihong Wang Research Group/University of Chicago</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p><em>The <a href="https://theconversation.com/us/topics/research-brief-83231">Research Brief</a> is a short take about interesting academic work.</em> </p>
<h2>The big idea</h2>
<p>My colleagues and <a href="https://scholar.google.com/citations?user=9xDIug8AAAAJ&hl=en">I</a> have developed a flexible, stretchable electronic device that runs machine-learning algorithms to continuously collect and analyze health data directly on the body. The skinlike sticker, developed <a href="https://wanglab.uchicago.edu/">in my lab</a> at the University of Chicago’s Pritzker School of Molecular Engineering, includes a soft, stretchable computing chip that mimics the human brain. </p>
<p>To create this type of device, we turned to electrically conductive polymers that have been used to build semiconductors and transistors. These polymers are made to be stretchable, like a rubber band. Rather than working like a typical computer chip, though, the chip we’re working with, called a neuromorphic computing chip, functions more like a human brain. It’s able to both store and analyze data.</p>
<p>To test the usefulness of the new device, my colleagues and I used it to analyze electrocardiogram data representing the electrical activity of the human heart. We trained the device to classify ECGs into five categories: healthy and four types of abnormal signals. Even in conditions where the device is repeatedly stretched by movements of the wearer’s body, the device <a href="https://doi.org/10.1016/j.matt.2022.07.016">could still accurately classify the heartbeats</a>. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a small rectangle of clear rubber being stretched between two hands we face in the background" src="https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=378&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=378&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=378&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=475&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=475&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494503/original/file-20221109-13740-snz30g.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=475&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">These electronic circuits are flexible and stretchable.</span>
<span class="attribution"><span class="source">UChicago Pritzker Molecular Engineering/John Zich</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<h2>Why it matters</h2>
<p>Most of the signals from the human body, such as the electrical activity in the heart recorded by ECG, are typically weak and subtle. Accurately recording these small signals requires direct contact between electronic devices and the human body. This can only be achieved by fabricating electronic devices to be as soft and stretchy as skin. We envision that wearable electronics will play a key role in tracking complex indicators of human health, including body temperature, cardiac activity, levels of oxygen, sugar, metabolites and immune molecules in the blood. </p>
<p>Analyzing large amounts of continuously acquired health data is challenging, however. A single piece of data must be put into the broader perspective of a patient’s full health history, and that is a big task. Cutting-edge machine-learning algorithms that identify patterns in extremely complex data sets are the most promising route to being able to pick out the most important signals of disease. </p>
<p>A typical approach to using machine learning to analyze real-time health data is to transmit the data wirelessly from wearable devices to a computer. But this poses challenges. Sending health data wirelessly is not only slow and consumes extra power, but it also raises privacy concerns. Our research aims to make the AI analysis of health data happen within these skinlike wearable devices, which would minimize the amount of information a device would need to transmit. </p>
<p>The ultimate goal is for this on-the-spot analysis to be able to send patients or health care providers timely alerts, or even one day automatically adjust medication dispensed by other wearable or implanted devices.</p>
<h2>What other research is being done</h2>
<p>Other research about AI processing health data collected from wearable devices has mainly involved transferring the data to computers running AI algorithms. These projects have demonstrated the potential of AI for <a href="https://doi.org/10.1002/adma.202104178">extracting useful information</a> from complicated health data.</p>
<p>The recent development of <a href="https://doi.org/10.1038/nmat4856">flexible neuromorphic processors</a> is an important step toward running AI data analysis directly on wearable devices, but these flexible processors lack skinlike stretchability and softness, which makes it difficult to build them into wearable devices. In contrast, our device has the skinlike properties necessary for a wearable health monitor.</p>
<h2>What’s next</h2>
<p>Moving forward, researchers are likely to extend this type of AI analysis integrated in wearable devices to other types of health conditions and diseases. My lab is planning to improve our device, both to better integrate the device’s components and expand the types of machine-learning algorithms it can be used with.</p>
<p>Our work is a good starting point for creating devices that build artificial intelligence into wearable electronics – devices that could help people live longer and healthier lives.</p><img src="https://counter.theconversation.com/content/189860/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sihong Wang receives funding from the Office of Naval Research, National Science Foundation, and National Institute of Health. He has submitted a patent application for the technology described in this article.</span></em></p>A type of computer chip that mimics both the skin and brain could pave the way for wearable devices that monitor and analyze health data using AI right on the body.Sihong Wang, Assistant Professor of Molecular Engineering, University of Chicago Pritzker School of Molecular EngineeringLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1876272022-07-27T03:30:05Z2022-07-27T03:30:05ZAmazon just took over a primary healthcare company for a lot of money. Should we be worried?<figure><img src="https://images.theconversation.com/files/476193/original/file-20220727-25-upsuc.jpeg?ixlib=rb-1.1.0&rect=67%2C19%2C6396%2C4283&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>This week Amazon announced <a href="https://press.aboutamazon.com/news-releases/news-release-details/amazon-and-one-medical-sign-agreement-amazon-acquire-one-medical">plans</a> to fork out US$3.9 billion (A$5.6 billion) to acquire US healthcare company <a href="https://www.onemedical.com/about-us/">One Medical</a>. </p>
<p>One Medical <a href="http://cnet.com/tech/services-and-software/amazon-to-acquire-one-medical-in-major-boost-to-its-health-care-business/">reportedly</a> provides primary care on a membership basis to some 800,000 people across the United States. In its own words, it claims to be “on a mission to make getting quality care more affordable, accessible and enjoyable for all”.</p>
<p>But why is Amazon – the company that helps you get a cheap home projector, or a toaster – investing in this area?</p>
<h2>What is One Medical?</h2>
<p>With a subscription fee of just US$199 per year, One Medical helps bridge the gap between the US’s inefficient public healthcare system and people’s need for (expensive) healthcare insurance. </p>
<p>It provides a comprehensive set of online resources for paying members, including a mobile app to seek medical support and “24/7 access to virtual care”.</p>
<p>Evidently the company has done well for itself, reporting a net revenue of more than US$250 million in 2022’s <a href="https://investor.onemedical.com/news-releases/news-release-details/one-medical-announces-results-first-quarter-2022">first quarter</a>. </p>
<p>Meanwhile, Amazon has been increasing its presence in the healthcare sector for some years. In 2018 it acquired <a href="https://www.pillpack.com/">PillPack</a>, which became <a href="https://pharmacy.amazon.com">Amazon Pharmacy</a>. And in 2020 it introduced <a href="https://amazon.care/">Amazon Care</a> – a virtual healthcare company that connects patients with a range of telehealth and primary care services.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1547297226392801281"}"></div></p>
<p>By acquiring One Medical, which was a competitor, Amazon is moving further in on the US healthcare market. This isn’t dissimilar to what it did with book retailers, when it first launched as what was essentially an <a href="https://www.businessinsider.com/amazon-opened-22-years-ago-see-the-business-evolve-2017-7">online bookstore</a>.</p>
<h2>Is it all about data?</h2>
<p>Amazon knows a lot about its customers. Through user browsing and purchases made on its website, it collects <a href="https://www.theguardian.com/technology/2022/feb/27/the-data-game-what-amazon-knows-about-you-and-how-to-stop-it">vast amounts</a> of data to better understand what people need and want – with the ultimate goal of selling more products and services.</p>
<p>Amazon also has the option to tap into a worldwide network of Amazon-branded devices, such as Echo and Alexa. <a href="https://arxiv.org/abs/2204.10920">Recent research</a> has suggested Amazon uses voice data collected through Alexa to target potential customers with advertisements. </p>
<p>Often, tech companies claim they collect data to generate a more positive experience for customers. They might be able to present you with personalised product options, saving you time and energy.</p>
<p>But what about when you combine this data with more privileged and sensitive information related to your health? </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/amazon-echos-privacy-issues-go-way-beyond-voice-recordings-130016">Amazon Echo’s privacy issues go way beyond voice recordings</a>
</strong>
</em>
</p>
<hr>
<h2>Connecting the dots</h2>
<p>Amazon isn’t just a giant online shopping mall. It’s also a leading provider of artificial intelligence (AI) services. </p>
<p>While there may be some legislative protections in certain jurisdictions, it wouldn’t be difficult for Amazon to connect the dots between people’s healthcare data and all the other data it already collects. </p>
<p>An Amazon spokesperson said One Medical customer information protected under the US Health Insurance Portability and Accountability Act (HIPAA) would be “handled separately from all other Amazon businesses as required by law”. </p>
<p>This does point to some basic level of privacy protection; <a href="https://www.proofpoint.com/au/threat-reference/hipaa-compliance.">HIPAA</a> is designed to protect people’s personally identifiable information, medical history and other sensitive health data. </p>
<p>But how well Amazon can assure customers this is being adhered to will hinge on it being transparent. Without this, it will be hard for anyone on the outside to figure out the inner workings of the data handling. </p>
<p>The spokesperson said:</p>
<blockquote>
<p>As required by law, Amazon will never share One Medical customers’ personal health information outside of One Medical for advertising or marketing purposes of other Amazon products and services without clear permission from the customer.</p>
</blockquote>
<p>In regard to needing “clear permission from customers”, ideally this means Amazon will ensure the permissions process is absolutely transparent. But transparency around data-sharing requests remains a murky issue in the big tech space. </p>
<p>After all, voice data collected by Amazon devices can <a href="https://au.pcmag.com/smart-home/88869/how-to-review-and-delete-your-alexa-history">be deleted</a> – but how many people do this? How many are aware they can? </p>
<p>Will Amazon start targeting <a href="https://www.amazon.com/stores/page/5C6C0A16-CE60-4998-B799-A746AE18E19B">Amazon Pharmacy</a> ads for vital medications to One Medical patients who have provided “clear permission” for data sharing?</p>
<p>In the past, Amazon has admitted to handing over people’s personal data (collected through its Ring doorbells) to US police, <a href="https://www.news.com.au/technology/online/security/amazons-ring-shared-footage-to-police-without-owners-consent/news-story/90eeb2d1efa4add762f1bc87526cf231">without consent or warrants</a>. </p>
<h2>Expanding its empire?</h2>
<p>As Amazon steps further into the healthcare space, it’s not a stretch to think it could combine its AI capabilities and Alexa voice data to target sick people with medical products or Amazon Care services.</p>
<p>In a worst-case scenario, we may see Amazon monopolise the US healthcare industry, with its usual practice of undercutting competitors and hard-selling to customers. It lures customers with low prices, before egging them into buying more.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=459&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=459&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=459&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=577&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=577&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476011/original/file-20220726-22016-9hhpjw.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=577&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Amazon tries to keep users in its online retail environment by constantly suggesting more products to buy.</span>
<span class="attribution"><span class="source">Author provided</span></span>
</figcaption>
</figure>
<p>Amazon Pharmacy already offers <a href="https://www.businessinsider.com/amazon-starts-selling-prescription-medication-in-us-2020-11">discounted drugs</a> to Prime members. And it could be imagined those willing to pay higher fees might secure better healthcare from Amazon, opening a door into health insurance services. </p>
<p>The wealth of information Amazon is aggregating also makes it a more attractive target for cyber attacks and data leaks. Information that was previously held in various, disparate networks is now contained within the servers of one organisation. Criminals will inevitably take an interest. </p>
<p>The sensitive nature of patient information, coupled with the fact that many health organisations still use outdated digital infrastructure, means the healthcare industry is ripe for exploitation. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/australian-hospitals-are-under-constant-cyber-attack-the-consequences-could-be-deadly-150164">Australian hospitals are under constant cyber attack. The consequences could be deadly</a>
</strong>
</em>
</p>
<hr>
<h2>Could it happen here?</h2>
<p>Luckily, the Australian healthcare system is not like the US model, where there’s no universal healthcare program.</p>
<p>Currently, <a href="https://www.health.gov.au/health-topics/private-health-insurance/private-health-insurance-reforms">just over half</a> of Australian residents have private health insurance. But private health membership has declined, on and off, since the country’s publicly funded universal healthcare scheme was introduced in 1975 (as Medibank), before being replaced by the Medicare system in 1984.</p>
<p>Australia has <a href="https://www.accc.gov.au/consumers/health-home-travel/private-health-insurance">more than 30</a> health insurers offering around 3,500 different health insurance products. With this much competition, it’s unlikely Amazon will be interested in entering the Australian market with healthcare products – at least for the foreseeable future.</p><img src="https://counter.theconversation.com/content/187627/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>One Medical provides primary healthcare services to people across the US.Mohiuddin Ahmed, Lecturer of Computing & Security, Edith Cowan UniversityPaul Haskell-Dowland, Professor of Cyber Security Practice, Edith Cowan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1790812022-03-31T12:44:17Z2022-03-31T12:44:17ZBrains are bad at big numbers, making it impossible to grasp what a million COVID-19 deaths really means<figure><img src="https://images.theconversation.com/files/455044/original/file-20220329-13-xqeqii.jpg?ixlib=rb-1.1.0&rect=0%2C335%2C7000%2C6371&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The human brain isn't built to understand large numbers.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/digital-binary-code-human-head-illustration-royalty-free-image/1324553121?adppopup=true">OsakaWayne Studios/Moment via Getty Images</a></span></figcaption></figure><p>On May 12, 2022, President Joe Biden marked the grim milestone of <a href="https://www.cbsnews.com/news/covid-deaths-1-million-biden/">1 million confirmed COVID-19 deaths</a> in the U.S. For most people, visualizing what a million of anything looks like is an impossible task. The human brain just isn’t built to comprehend such large numbers.</p>
<p>We are two neuroscientists who study the processes of <a href="https://scholar.google.com/citations?user=Z54dOfYAAAAJ&hl=en&oi=ao">learning</a> and <a href="https://scholar.google.com/citations?user=0JIqhZwAAAAJ&hl=en&oi=ao">numerical cognition</a> – how people use and understand numbers. While there is still much to discover about the mathematical abilities of the human brain, one thing is certain: People are <a href="https://nautil.us/how-to-understand-extreme-numbers-5854/">terrible at processing large numbers</a>.</p>
<p>During the peak of the omicron wave, over 3,000 U.S. residents died per day – <a href="https://www.nytimes.com/interactive/2022/02/01/science/covid-deaths-united-states.html">a rate faster than in any other large high-income country</a>. A rate of 3,000 deaths per day is already an incomprehensible number; 1 million is unfathomably larger. Modern neuroscience research can shed light on the limitations of the brain in how it deals with large numbers – limitations that have likely factored in to how the American public perceives and responds to COVID-related deaths. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A balance with a large ball on one side and a small ball on the other side." src="https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455047/original/file-20220329-19-ubf0jd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Brains are much better at thinking of large numbers in terms of what is bigger or smaller than in assessing absolute values.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/balance-royalty-free-image/1310052459">Daniel Grizelj/Digital Vision via Getty Images</a></span>
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<h2>The brain is built to compare, not to count</h2>
<p>Humans process numbers using networks of interconnected neurons throughout the brain. Many of these pathways involve the <a href="https://doi.org/10.1080/02643290244000239">parietal cortex</a> – a region of the brain located just above the ears. It’s responsible for processing all different sorts of quantities or magnitudes, including <a href="https://doi.org/10.1016/j.tics.2003.09.002">time, speed and distance</a>, and <a href="https://dx.doi.org/10.1098%2Frstb.2009.0028">provides a foundation</a> for other numerical abilities.</p>
<p>While the written symbols and spoken words that humans use to represent numbers are a cultural invention, understanding quantities themselves is not. Humans – as well as many animals including <a href="https://doi.org/10.1098/rstb.2016.0511">fish</a>, <a href="https://doi.org/10.1098/rspb.2008.0702">birds</a> and <a href="https://doi.org/10.1037/0097-7403.33.1.32">monkeys</a> – show rudimentary numerical abilities shortly after birth. Infants, adults and even rats find it <a href="https://doi.org/10.1016/S0166-2236(98)01263-6">easier to distinguish between relatively small numbers</a> than larger ones. The difference between 2 and 5 is much easier to visualize than the difference between 62 and 65, despite the fact that both number sets differ by only 3. </p>
<p>The brain is optimized to recognize small quantities because smaller numbers are what people tend to interact with most on a daily basis. Research has shown that when presented with different numbers of dots, both <a href="https://doi.org/10.1111/j.2044-835X.1995.tb00688.x">children</a> and <a href="https://doi.org/10.1037/0096-3445.111.1.1">adults</a> can intuitively and rapidly recognize quantities less than three or four. Beyond that, people have to count, and as the numbers get higher, intuitive understanding is replaced by abstract concepts of large, individual numbers.</p>
<p>This bias toward smaller numbers even plays out day to day in the grocery store. When researchers asked shoppers in a checkout line to estimate the total cost of their purchase, <a href="https://doi.org/10.1037/dec0000089">people reliably named a lower price than the actual amount</a>. And this distortion increased with price – the more expensive the groceries were, the larger the gap between the estimated and actual amounts. </p>
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<figcaption><span class="caption">Once you get into large numbers like millions and billions, the brain begins to start thinking of these values as categories rather than actual numbers. J Baikoff via Youtube.</span></figcaption>
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<h2>Bad at big numbers</h2>
<p>Since anything bigger than 5 is too large a quantity to intuitively recognize, it follows that the brain must rely on different methods of thinking when confronted with much bigger numbers.</p>
<p>One prominent theory proposes that the brain relies on an inexact method whereby it represents <a href="https://doi.org/10.1016/j.tics.2004.05.002">approximate quantities</a> through a sort of <a href="https://doi.org/10.1016/j.cognition.2007.06.004">mental number line</a>. This line, imagined in our mind’s eye, organizes small to large numbers from left to right (though this orientation depends on <a href="https://journals.sagepub.com/doi/10.1177/0022022111406251">cultural convention</a>). People tend to make consistent errors when using this internal number line, often <a href="https://doi.org/10.1016/j.cognition.2007.06.004">underestimating extremely large quantities and overestimating relatively smaller quantities</a>. For example, research has shown that college students in geology and biology courses commonly underestimate the time <a href="https://doi.org/10.5408/1089-9995-55.5.413">between the appearance of the first life on Earth and the dinosaurs</a> – which is billions of years – but overestimate how long dinosaurs actually lived on Earth – millions of years. </p>
<p>Further research looking at how people estimate the value of large numbers shows that many people <a href="https://doi.org/10.1111/cogs.12028">place the number 1 million halfway</a> between 1,000 and 1 billion on a number line. In reality, a million is 1,000 times closer to 1,000 than 1 billion. This number line gaffe may visually represent how people people <a href="https://doi.org/10.1111/cogs.12342">use words like “thousand” and “billion” as category markers</a> that represent “big” and “bigger” rather than distinct values.</p>
<p>When grappling with numbers outside of everyday experience, precise values just mean less. </p>
<h2>1,000,000 deaths</h2>
<p>Numbers are a useful, clear and efficient way to summarize the harms of the pandemic, but the truth is that the brain simply can’t understand what it means that a million people have died. By abstracting deaths into impossibly large numbers, people fall prey to the limitations of the mind. In doing so, it’s easy to forget that every single numerical increase represents the entire lived experience of another human being.</p>
<p>[<em>Over 150,000 readers rely on The Conversation’s newsletters to understand the world.</em> <a href="https://memberservices.theconversation.com/newsletters/?source=inline-150ksignup">Sign up today</a>.]</p>
<p>This pandemic has been full of hard-to-comprehend numbers. The <a href="https://doi.org/10.1001/jamainternmed.2020.4221">filtration efficiency of various face masks</a>, the <a href="https://theconversation.com/coronavirus-tests-are-pretty-accurate-but-far-from-perfect-136671">accuracy of different COVID-19 tests</a>, statewide case numbers and <a href="https://theconversation.com/why-coronavirus-death-rates-cant-be-summed-up-in-one-simple-number-135758">worldwide death rates</a> are all complicated concepts far beyond the brain’s intuitive number processing abilities. Yet these numbers – <a href="https://doi.org/10.1377/hlthaff.26.3.741">and how they are presented</a> – matter immensely. </p>
<p>If the brain were built to understand these kinds of numbers, perhaps we would have made <a href="https://doi.org/10.1038/s41562-020-0884-z">different individual decisions or taken different collective action</a>. Instead, we now mourn for the million people behind the number.</p><img src="https://counter.theconversation.com/content/179081/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The brain can count small numbers or compare large ones. But it struggles to understand the value of a single large number. This fact may be influencing how people react to numbers about the pandemic.Lindsey Hasak, Doctoral Candidate in Developmental and Psychological Sciences, Stanford UniversityElizabeth Y. Toomarian, Director, Brainwave Learning Center, Synapse School & Research Associate, Stanford UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1753162022-01-27T18:56:28Z2022-01-27T18:56:28ZOttawa’s use of our location data raises big surveillance and privacy concerns<figure><img src="https://images.theconversation.com/files/442544/original/file-20220125-23-1arca3.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5615%2C3159&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Cellular phones track and reveal owners' movements, generating useful data for pandemic tracking.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>News recently broke that <a href="https://nationalpost.com/news/canada/canadas-public-health-agency-admits-it-tracked-33-million-mobile-devices-during-lockdown">the Public Health Agency of Canada (PHAC)</a> had been <a href="https://buyandsell.gc.ca/procurement-data/tender-notice/PW-21-00979277">procuring location data</a> from millions of mobile devices to study how COVID-19 lockdowns were working. </p>
<p>Appalled opposition MPs called for an emergency meeting of the ethics committee of the House of Commons, fearing that the pandemic was being used as an excuse to scale up surveillance. </p>
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<figcaption><span class="caption">Global News reports on the Canadian government’s use of location data.</span></figcaption>
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<p>At the same time, <a href="https://www.dagstuhl.de/en/program/calendar/semhp/?semnr=22022">our group of interdisciplinary experts from around the world</a> convened at a research retreat on the subject of the ethics of mobility data analysis. Computer scientists, together with philosophers and social scientists, looked at the ethical challenges posed by the uses of mobility data, especially those legitimized by the pandemic. </p>
<h2>The collection and use of location data</h2>
<p>Telecommunications providers like Telus and Rogers know where cellphones are located by triangulation from the cell towers to which each phone connects. The data is a commodity and <a href="https://www.telus.com/en/about/privacy/data-for-good/">they share it, in anonymized form, with others, including academics</a>. </p>
<p>Smartphones can also use the <a href="https://electronics.howstuffworks.com/gps-phone.htm">global positioning system (GPS)</a> or their connection to Wi-Fi access points to collect location data and share it with companies to receive customized services, like navigation or recommendations. </p>
<p>Many companies are interested in gathering location data even when their services don’t require it, as selling that data to other companies is an attractive prospect. For example, <a href="https://twitter.com/TectonixGEO/status/1242628347034767361">Tectonix tweeted</a> in 2020 about a dashboard it had developed with data acquired from <a href="https://xmode.io/">X-Mode</a> to track the cellphones of <a href="https://www.cnn.com/2020/04/04/tech/location-tracking-florida-coronavirus/index.html">people who partied on a Fort Lauderdale beach</a> during spring break in March.</p>
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<h2>Not so anonymous</h2>
<p>Companies and data brokers may claim to only store or sell anonymized location data, but that’s little comfort when <a href="https://doi.org/10.1038/s41467-019-10933-3">location data itself is so identifiable and revealing</a>. In particular, and contrary to popular belief, it’s almost impossible to make detailed location data truly anonymous. Even if a sequence of locations visited by an individual is stripped of any connection to that person’s name or other identifiers, the <a href="https://doi.org/10.1016/j.jcss.2014.04.024">possibility of re-identification due to the inherent information contained in this trajectory</a> must be considered. </p>
<p>It becomes quite simple to look up who lives at a given location and assume that where someone spends their days is their work, and where they are in the evenings is their home, and this can uniquely identify a person. </p>
<p>Similar to records of a person’s online activities, the places visited can also reveal sensitive data such as health (repeated visits to a particular clinic), religion, hobbies and family (where your children go to school). Location data is hard to anonymize and can be used to re-identify a person, and all sorts of other information can be inferred from patterns of movement.</p>
<p>Government agencies like PHAC want to use mobility data to understand trends in the “<a href="https://health-infobase.canada.ca/covid-19/covidtrends/?HR=1,4834&mapOpen=false">movement of populations during the COVID‑19 pandemic</a>” to study how the disease spreads and also to monitor how measures put in place, such as the confinement, are respected by the population. </p>
<p><a href="https://www.ctvnews.ca/politics/opposition-parties-team-up-to-call-emergency-house-health-ethics-committee-meetings-1.5734269">The fear expressed by Conservative and Bloc Québécois members of Parliament</a> is that the government is using the pandemic to justify a new level of surveillance of Canadians that could continue even after the pandemic is over. </p>
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<strong>
Read more:
<a href="https://theconversation.com/health-data-collected-during-the-coronavirus-pandemic-needs-to-be-managed-responsibly-141978">Health data collected during the coronavirus pandemic needs to be managed responsibly</a>
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<h2>Best practices</h2>
<p>If governments are going to promote contact tracing or collecting mobility data for health reasons such as transmission of COVID-19, <a href="https://www.eff.org/deeplinks/2020/04/challenge-proximity-apps-covid-19-contact-tracing">best practices</a> suggest that the scope should be clearly defined, the information gathered kept to a minimum and there should be an expiry date for the project after which it’s reviewed. Some specific practices that government agencies like PHAC might consider include:</p>
<p>First, as PHAC is discovering, transparency is key: be transparent about what information is sought, how it will be stored and for how long, who will have access and what outcomes are anticipated. </p>
<p>In particular, due to its sensitivity with respect to privacy but also other ethical issues — such as the risks of stigmatization of particular groups in the population — the collection and analysis of large location datasets by governments should be made public from the beginning in a manner similar to the discussions around contact-tracing applications. </p>
<p>Location data isn’t representative since some groups, like children or the elderly, are less likely to carry smartphones, while others are more tech-savvy. Biased data needs to be accounted for, and transparency is a way for the public to audit the use of such data. </p>
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<strong>
Read more:
<a href="https://theconversation.com/race-based-covid-19-data-may-be-used-to-discriminate-against-racialized-communities-138372">Race-based COVID-19 data may be used to discriminate against racialized communities</a>
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<p>Second, any organization gathering or working with data should develop a <a href="https://assistant.portagenetwork.ca/">data-management plan</a> that covers how it will deal with security and privacy implications. </p>
<p>Transparency and accountability around data plans is part of ensuring long-term ethical maintenance. Mobility data can easily be misused by third parties to make inappropriate inferences about citizens, so brokers, governments and researchers need to plan for how they will share data. This is especially true for researchers who value preservation of research data to enable replication and further research. </p>
<p>Open datasets allow results to be replicated and new research to be imagined combining past datasets, but openly shared datasets can also be used to re-identify people in inappropriate ways. The way data is anonymized before being shared is of great importance. It should also be made public to be open to the scrutiny of experts or associations concerned about privacy. </p>
<p>Third, civil society organizations need to be engaged in a dialogue around government policies, regulations and bias. Public trust in government surveillance and academic research needs to be developed and maintained — before there are scandals, not after.</p>
<p>We especially need to talk about who is represented and who is excluded, and what the implications are. For example, if the elderly or economically disadvantaged are less likely to have smartphones, then mobility data may under-represent their interests. That’s detrimental if this data is used to guide public policies. </p>
<p>Finally, we all need to contribute to the development of a new consensus around surveillance whether by governments, companies or researchers. PHAC could lead a conversation around health surveillance.</p>
<p>As the pandemic has shown, public trust in health measures is important to their success. Transparency followed by dialogue could allow appropriate data gathering and use, while still enabling useful research, especially in times of crisis.</p>
<p><em>Chiara Renso of the Institute of Information Science and Technologies of National Research Council of Italy co-authored this article.</em></p><img src="https://counter.theconversation.com/content/175316/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Geoffrey M Rockwell receives funding from the Social Science and Humanities Research Council of Canada and holds a leadership role in the Canadian Society for Digital Humanities. He has also received funding from the Alberta Machine Intelligence Institute. He is affiliated with the AI, People, and Society Initiative sponsored by the ATB AI Lab. </span></em></p><p class="fine-print"><em><span>Bettina Berendt receives funding from the German Federal Ministry of Education and Research (BMBF) – Nr. 16DII113f. </span></em></p><p class="fine-print"><em><span>Florence Chee does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p><p class="fine-print"><em><span>Jeanna Matthews is affiliated with and holds leadership roles within the Association for Computing Machinery (ACM) and Institute of Electrical and Electronics Engineers (IEEE).</span></em></p><p class="fine-print"><em><span>Sébastien Gambs receives funding from the Natural Sciences and Engineering Research Council (NSERC) of Canada, through the Discovery grant program, as well as from the Canada Research Chair program. </span></em></p>In order to track the pandemic, the Public Health Agency of Canada has been using location data without explicit and informed consent. Transparency is key to building and maintaining trust.Geoffrey M Rockwell, Professor of Philosophy and Digital Humanities, University of AlbertaBettina Berendt, Professor, Internet and Society, Technische Universität BerlinFlorence M. Chee, Associate Professor of Digital Communication, Loyola University ChicagoJeanna Matthews, Professor of Computer Science, Clarkson UniversitySébastien Gambs, Professor, Computer Science, Université du Québec à Montréal (UQAM)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1651032021-07-27T14:52:37Z2021-07-27T14:52:37ZNHS plan to share GP patient data postponed – but will new measures address concerns?<p>The UK government <a href="https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/secretary-of-state-letter-to-general-practice">has postponed</a> its controversial GP patient data gathering scheme in response to concerns over privacy. The General Practice Data for Planning and Research (GPDPR) scheme had planned to upload the data of England’s 61 million NHS users, in a “<a href="https://theconversation.com/your-nhs-data-is-completely-anonymous-until-it-isnt-22924">pseudonymised</a>” form, to a central database. That database could then be accessed by institutions to advance health research and planning. </p>
<p>GPDPR was <a href="https://theconversation.com/nhs-data-gathering-government-plans-to-collect-and-share-health-records-are-hugely-concerning-heres-why-162699">heavily criticised</a> for being rushed through without patients being properly informed. The pseudonymised form (with obviously identifiable information removed) in which the patient data would enter the database was also challenged, with researchers pointing out that it <a href="https://www.theguardian.com/technology/2019/jul/23/anonymised-data-never-be-anonymous-enough-study-finds">did not do enough</a> to guarantee patient privacy.</p>
<p>The government has laid out a series of significant improvements to the data-sharing scheme which will now be carried out before its eventual implementation. But while these proposed changes are welcome, the future of health data in the UK, after years of wrangling and U-turns, is yet to be free of controversy.</p>
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Read more:
<a href="https://theconversation.com/nhs-data-gathering-government-plans-to-collect-and-share-health-records-are-hugely-concerning-heres-why-162699">NHS data gathering: government plans to collect and share health records are hugely concerning – here's why</a>
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<p>The pandemic has called for the productive use of detailed health data, held in the UK by the NHS in a variety of specialised databases. Such data has been used in the <a href="https://www.opensafely.org">OpenSAFELY</a> environment at the University of Oxford, which produced <a href="https://www.nature.com/articles/s41586-020-2521-4">early insights</a> into factors associated with COVID-related deaths without compromising patient privacy.</p>
<p>It’s less clear whether the UK government’s own initiatives were productive, let alone responsible. A comprehensive list of the data sets included in the <a href="https://www.england.nhs.uk/contact-us/privacy-notice/how-we-use-your-information/covid-19-response/nhs-covid-19-data-store/">COVID data store</a>, built by big data company Palantir, was never published. We’re still in the dark about what AI company Faculty and others actually <a href="https://theconversation.com/why-we-need-to-know-more-about-the-uk-governments-covid-19-data-project-and-the-companies-working-on-it-141078">used it for</a>. Meanwhile, <a href="https://www.thebureauinvestigates.com/stories/2021-02-24/revealed-data-giant-given-emergency-covid-contract-had-been-wooing-nhs-for-months">stories abounded</a> about senior NHS and government officials talking to tech companies about the sale of NHS data.</p>
<h2>Previous data-sharing plans</h2>
<p>Then, in spring 2021, the UK government decided to revive a dormant plan. For much of 2013 and 2014, the then-health secretary, Jeremy Hunt, and his team at NHS England had attempted to introduce the “care.data” scheme. This would have gathered GP data from all English GPs, combining it with health databases held by the health service’s IT agency, <a href="https://digital.nhs.uk/">NHS Digital</a>, to create a large data set for a vaguely defined set of purposes. </p>
<p>The plan was thought to be reckless. There was a backlash from GPs and the wider public, with the press raking up stories of past <a href="https://theconversation.com/time-for-some-truth-about-who-is-feeding-off-our-nhs-data-23998">dubious NHS health data sales</a>. This forced the introduction of opt-outs, definite and indefinite postponements, and eventually <a href="https://theconversation.com/care-data-has-been-scrapped-but-your-health-data-could-still-be-shared-62181">the abandonment</a> of care.data in 2016.</p>
<p>This chaos seemed to be repeating itself in 2021, and at a very high speed. The <a href="https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research">GPDPR</a> scheme <a href="https://digital.nhs.uk/news-and-events/latest-news/improved-collection-of-gp-data-launched">was announced</a> on May 12 2021, catching GPs and the public by surprise. The advocacy group <a href="https://medconfidential.org/how-to-opt-out/">medConfidential</a> quickly unearthed a way for patients to opt out of the scheme, with <a href="https://www.lhmp.co.uk/news/general-practice-data-for-planning-and-research-gpdpr/">GPs providing information</a> to help them do so. </p>
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<img alt="A phone showing an opt-out option" src="https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/413329/original/file-20210727-15-k9x7qv.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some patients rushed to opt out of the new data-sharing scheme.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/consent-withdrawal-form-nhs-digital-website-1980110576">mundissima/Shutterstock</a></span>
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</figure>
<p>The scheme was postponed on June 8 by a few months after objections were raised by <a href="https://www.rcgp.org.uk/-/media/Files/News/rcgp-bma-letter-gpdpr.ashx?la=en">various medical associations</a> and the <a href="https://www.digitalhealth.net/2021/06/calls-to-pause-new-gp-data-collection-service-gather-speed/">MP David Davis</a>. Meanwhile, <a href="https://www.hdruk.ac.uk/news/nhs-digital-gp-dataset-joint-statement-from-the-medical-and-social-research-community/">health researchers</a> expressed their displeasure at privacy concerns preventing data collection that could one day be used to save lives. So far, this was all very 2014.</p>
<p>But at the end of July 2021, we appear to have reached a point where the officials behind the GPDPR scheme are finally listening to critics’ concerns. We may no longer be headed for a repeat of the complete failure of care.data.</p>
<h2>Proposed improvements</h2>
<p>GPDPR has now been postponed again until a collection of serious mitigations are put in place. In my view, as a researcher of health data and cybersecurity, the most important of these is that GP data, once uploaded, will only be made available in TREs (trusted research environments) similar to the OpenSAFELY one mentioned above. This means a move from sharing data in a “safe” way to sharing access to data in a way that is verifiably safe through monitoring and transparency. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1417164844369854478"}"></div></p>
<p>Much of the care.data debate concerned the <a href="https://theconversation.com/your-nhs-data-is-completely-anonymous-until-it-isnt-22924">safety</a> and <a href="https://theconversation.com/foi-reveals-cynical-logic-that-compromises-nhs-data-privacy-24750">legal status</a> of “pseudonymised” data. Individual level health data is considered too rich to be safely anonymised, jeopardising patient privacy. Accessing data sets only within TREs mitigates this issue, and also the problem of data sets being shared onward.</p>
<p>TREs also provide a unique opportunity for transparency. All queries executed against the data can be recorded and monitored – OpenSAFELY even publishes them. This will make it easier to guarantee the welcome promise that the GP data will only be used for improving health and care.</p>
<p><a href="https://www.pulsetoday.co.uk/news/technology/gps-will-need-to-risk-assess-mass-patient-data-extraction-says-ico/">It was clear already</a> that both GPs and NHS Digital, will be legally required to produce data protection impact assessments for the scheme. These will now be published well ahead of the data collection, offering a great opportunity for transparency, consultation and scrutiny.</p>
<p>Another mitigation concerns GPDPR opt-outs, which were initially only intended to apply to data not yet uploaded to the new database. This was in contradiction, at least in spirit, with <a href="https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/right-to-erasure/">data protection rights</a> on withdrawing consent and requesting data deletion. The option to opt out of the GPDPR scheme has now been extended for at least another year. Finally, the government has promised better communication to the public before the scheme goes ahead.</p>
<h2>An end to the controversy?</h2>
<p>Overall, these new measures provide hope. But some concerns remain. First, many of the concerns expressed about GP data also apply to hospital data, which is currently widely shared in pseudonymised form, including for purposes that many would <a href="https://theysolditanyway.com/">consider commercial</a>. This, and a <a href="https://www.ft.com/content/6f9f6f1f-e2d1-4646-b5ec-7d704e45149e">range of other forms of sharing</a>, make it hard to take the <a href="https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/secretary-of-state-letter-to-general-practice">government’s line</a>, “patient data is not for sale and never will be”, entirely seriously.</p>
<p>If the government was serious about protecting health data, it would ensure that hospital data, genomic data, and other centralised databases were also only available through TREs, and only accessible for the purpose of improving health and care.</p>
<p>More generally, the current UK government continues to put forward a narrative of commercialisation and innovation, <a href="https://www.gov.uk/government/publications/taskforce-on-innovation-growth-and-regulatory-reform-independent-report">demanding de-regulation</a> where necessary. In particular, the government’s promises sit awkwardly with the emphasis on innovation in its <a href="https://www.gov.uk/government/publications/data-saves-lives-reshaping-health-and-social-care-with-data-draft/data-saves-lives-reshaping-health-and-social-care-with-data-draft#helping-developers-and-innovators-to-improve-health-and-care">health data sharing strategy</a>. With these tensions still to be resolved, and a new <a href="https://commonslibrary.parliament.uk/research-briefings/cbp-9232/">health and care bill</a> likely to be rushed through shortly, the future of health data in the UK is still highly uncertain.</p><img src="https://counter.theconversation.com/content/165103/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Eerke Boiten receives funding from various research funding organisations for research projects that are not closely related to the topic of this article. </span></em></p>The latest NHS data sharing scheme looked set to repeat past mistakes – but the latest postponement provides hope.Eerke Boiten, Professor of Cybersecurity, School of Computer Science and Informatics, De Montfort UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1535392021-03-01T20:01:36Z2021-03-01T20:01:36ZOntario’s digital health program has a data quality problem, despite billions in spending<figure><img src="https://images.theconversation.com/files/386757/original/file-20210226-13-12g63gf.jpg?ixlib=rb-1.1.0&rect=395%2C12%2C6851%2C5039&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Digital health technology, such as electronic health records, is believed to enhance patient-centred care, improve integrated care and ensure financially sustainable health care.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Digital health is about applying advanced information technologies to enable free flow of patient information across the circle of care. For patients, that means every health-care provider they see at different locations should be able to access relevant health record information quickly and efficiently. </p>
<p><a href="https://www.infoway-inforoute.ca/en/component/edocman/supporting-documents/partnership/3198-keynote-ontario-s-digital-health-strategy">Digital health technology</a>, such as electronic health records, is believed to enhance patient-centred care, improve integrated care and ensure financial sustainability of our health-care system. However, Ontarians are facing the tough reality that their health data are still fragmented, despite <a href="https://www.auditor.on.ca/en/content/news/16_newsreleases/2016news_3.03.pdf">billions of dollars spent over the last two decades</a> to enable fast and secure exchange of health information. The COVID-19 pandemic has brought to light even more data quality issues. </p>
<p>As noted in a recent <a href="https://nationalpost.com/news/canadas-public-data-on-covid-19-is-mostly-a-mess-heres-how-to-find-the-useful-info"><em>National Post</em> article</a>, much of the public data on COVID-19 is a mess. Not only are data on infected cases and deaths delayed, they are also incomplete. Ontario reportedly offered inconsistent counts between provincial medical officials and local public health units. No wonder the Ministry of Health admits that “<a href="http://health.gov.on.ca/en/pro/programs/connectedcare/oht/docs/dig_health_playbook_en.pdf">consistent standards are lacking across sectors — making it extremely difficult to integrate patient records or to integrate local systems with provincial ones</a>.” </p>
<p>It is a tough pill to swallow <a href="https://www.infoway-inforoute.ca/en/what-we-do/news-events/newsroom/2011-news-releases/137-infoway-invests-380-million-to-help-physicians-and-nurse-practitioners-implement-electronic-medical-record-emr-systems">after years of investment</a> aimed at enabling fast and secure health data exchange.</p>
<h2>Neither sustainable nor effective</h2>
<p>The Ontario government is taking two approaches to improving data quality, examples of which include accuracy and timeliness of data reported across different service providers. The first approach centres on improving health data exchange across heterogeneous systems (systems developed by different vendors and requiring different hardware and software configurations to operate) by using <a href="https://infocentral.infoway-inforoute.ca/en/standards/canadian/fhir">common communication standards</a>. </p>
<p>However, this approach is neither scalable nor sustainable as communications across these systems become increasingly complex, time-consuming and error-prone when more systems are added to the mix of systems. Inconsistent counts of COVID-19 infected cases and deaths provided by different levels of governments is a case in point. Not to mention that these standards evolve rapidly and <a href="https://orionhealth.com/media/4894/orion-health-interoperability-high-level-report-final-1.pdf">even previous versions of the same standard cannot be easily mapped and migrated to current ones</a>. </p>
<p>The second approach relies on the minimum common data set proposed in the <a href="http://health.gov.on.ca/en/pro/programs/connectedcare/oht/docs/dig_health_playbook_en.pdf">Digital Health Playbook</a>, a resource intended to guide health-care organizations to build their digital systems. The minimum data set contains data classes (such as individual patients) and their corresponding elements (such as date of birth) for clinical notes, laboratory information, medications, vital signs, patient demographics and procedures, to name a few uses. </p>
<figure class="align-center ">
<img alt="Illustration of a tablet showing patient information" src="https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=476&fit=crop&dpr=1 600w, https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=476&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=476&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=598&fit=crop&dpr=1 754w, https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=598&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/386758/original/file-20210226-15-m13tol.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=598&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Health-care providers need fast, secure access to medical records, including clinical notes, lab information, medications, vital signs, patient demographics and procedures.</span>
<span class="attribution"><span class="source">(Pixabay)</span></span>
</figcaption>
</figure>
<p>These data sets, while appropriate for the requirements of family physicians whose main responsibility is disease control and prevention, are not sufficient for treating complex patients who suffer from multiple health issues, which <a href="https://theconversation.com/good-governance-is-the-missing-prescription-for-better-digital-health-care-128375">demand a vast amount of health data from various health-care providers</a>. </p>
<p>These two approaches adopted by the Ontario government to address data quality issues are <a href="https://ipolitics.ca/2020/06/19/ontario-health-system-will-continue-to-fail-us-if-new-data-efforts-dont-translate-to-changes-for-patients-philpott/">neither sustainable nor effective</a>, so can hardly serve as a strategy guiding health digitalization. </p>
<p>As researchers focusing on IT in health governance, we propose that a data strategy encompass four pillars: </p>
<h2>1. Data quality standards</h2>
<p>First, data quality is an umbrella term that encompasses <a href="https://www.cihi.ca/sites/default/files/document/iqf-summary-july-26-2017-en-web_0.pdf">multiple dimensions</a> that include things like accuracy, accessibility and timeliness. And there are trade-offs among these dimensions. For example, increasing timely data reports may affect data comprehensiveness, which demands time to cover all the required data. </p>
<p>While “fit for use” (meaning the quality of data fits the requirements of their intended users) is considered appropriate and pragmatic, it needs to be clearly spelled out what quality standards need to be reinforced. Given the limited resources and increasing pressures to curb health-care costs, it becomes increasingly urgent to decide which data quality standards should be the focus. </p>
<h2>2. Sustainable, scalable, patient-centric platform</h2>
<p>Second, the health-care sector is not alone in dealing with decades-old systems and the low-quality data — such as <a href="https://ipolitics.ca/2020/06/19/ontario-health-system-will-continue-to-fail-us-if-new-data-efforts-dont-translate-to-changes-for-patients-philpott/">inaccurate COVID-19 case counts</a> — generated by these systems. Drawing on experiences from banks and other organizations, the health-care sector could <a href="https://www.himss.org/resources/electronic-health-record-data-governance-and-data-quality-real-world">create an open data platform</a> that enables data sharing across health-care providers and allows patients to share data from their social media and mobile and wearable devices. Countries such as <a href="https://www.ey.com/en_gl/health/how-will-you-design-information-architecture-to-unlock-the-power">the United Kingdom and Germany have started implementing the open data platform idea</a>.</p>
<h2>3. Measurable indicators of improvement</h2>
<p>Third, measurable outcomes pertaining to data quality improvement efforts need to be defined. Improvement efforts could include <a href="https://www.himss.org/resources/electronic-health-record-data-governance-and-data-quality-real-world">training programs on best practices</a> related to data entry, and introducing system features that enable data quality checking (for example, completeness or consistency). Measurable outcomes would ensure accountability and the achievement of the intended objectives, and inform future funding decisions. </p>
<h2>4. Improvement process adopted by providers</h2>
<p>Lastly, a data strategy needs to clearly define a data quality improvement and monitoring process where the quality of the data is continuously monitored and assessed to ensure that data support patient care and research. Data quality <a href="https://www.healthit.gov/playbook/pddq-framework/data-quality/data-quality-planning/">is a shared responsibility</a>, so the quality assurance process needs to take place collectively across providers but also within each provider. </p>
<p>To define and implement the data strategy, meaningful engagement with all stakeholders is key. For example, patients and providers need to be involved to identify the data required to treat the diseases that claim the most of our health-care budget, define quality dimensions of the data, and specify roles and responsibilities of maintaining the quality of data.</p>
<p>In contrast to the Band-Aid approach adopted by the Ontario government, the four-pillar data strategy is long-term, focused and holistic. It would ensure that data quality is placed at the front and centre of Ontario’s effort in health digitization. Following the strategy, our health-care system would develop a sustainable mechanism and a scalable capability to continuously improve data quality. </p>
<p>Without such a data strategy, Ontarians will stand to lose another decade and billions more.</p><img src="https://counter.theconversation.com/content/153539/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Linying Dong is affiliated with Ryerson University, and volunteers at the Board of Directors of Carefirst.</span></em></p><p class="fine-print"><em><span>Karim Keshavjee is the CEO and majority shareholder of InfoClin Inc, an organization that provides consulting on data extraction, data quality and data analytics. He has received funding from the College of Family Physicians of Canada, Diabetes Action Canada, the University of Calgary, Ryerson University and McMaster University. </span></em></p>Digital health can improve care, but in Ontario, health data are still fragmented, despite billions of dollars spent over the last two decades to enable fast and secure exchange of health information.Linying Dong, Professor, Ted Rogers School of Information Technology Management, Toronto Metropolitan UniversityKarim Keshavjee, Assistant Professor, Institute of Health Policy, Management and Evaluation, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1543132021-02-08T15:54:45Z2021-02-08T15:54:45ZA button that tells your boss you’re unhappy: why mental health wearables could be bad news at work<figure><img src="https://images.theconversation.com/files/383075/original/file-20210208-19-1nf6u4y.jpg?ixlib=rb-1.1.0&rect=22%2C0%2C7326%2C4902&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/modern-innovations-handsome-young-man-setting-524678926">G-Stock Studio/Shutterstock</a></span></figcaption></figure><p>With gyms closed and millions cooped up and restless at home, it’s little wonder that “healthtech” is now being billed as the <a href="https://www.forbes.com/sites/johnkoetsier/2020/10/16/apple-google-amazon-and-the-9-trillion-battle-over-the-future-of-healthtech-former-apple-ceo-john-sculley/?sh=a00b0c456033%5D">next big battleground</a> over which the likes of Microsoft, Apple and Google will fight. Chief among their products are wearable devices that measure your heart rate, your step count, and dozens of other data points that keep you informed about your physical health.</p>
<p>The increasing prevalence of these devices is to be welcomed. They help people track their workouts, setting quantifiable goals that can help them stay fit and healthy. </p>
<p>But the introduction of wearables that measure our mental health – like employee mood tracker “<a href="https://moodbeam.co.uk/business">Moodbeam</a>” – should be greeted with a more cautious optimism. Such devices will, after all, hold some of our most personal data – and constantly logging our emotional state might even be counterproductive in helping us achieve better mental health.</p>
<h2>The wearables boom</h2>
<p>Wearables are now commonplace in people’s lives. The wearable technology market is currently valued at <a href="https://www.grandviewresearch.com/industry-analysis/wearable-technology-market">US$37 billion</a> (£26.9 billion) and is forecast to grow to include 1 billion connected wearable devices <a href="https://www.statista.com/statistics/487291/global-connected-wearable-devices/">by 2022</a>. People value the ability to measure their health and performance, using “health indicators” like their heart rate to better plan workouts and fitness routines. </p>
<p>Wearables contribute to the “<a href="https://doi.org/10.1177%2F1461444815588768">quantified-self</a>” movement, which sees us use technology to collect and process more and more data about our lives in the hopes of optimising our behaviour. This movement has already spread into the workplace, with <a href="https://doi.org/10.1177%2F1461444820983324">office workers</a> now granted data showing them how long they spend sitting down during working hours. And now, companies on the hunt for the next big health indicator have landed on our mental health – a particular concern to emerge during the ongoing pandemic.</p>
<figure class="align-center ">
<img alt="A woman in a pharmacy checks her smartwatch" src="https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=448&fit=crop&dpr=1 600w, https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=448&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=448&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=563&fit=crop&dpr=1 754w, https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=563&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/383008/original/file-20210208-15-vitqgx.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=563&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Wearable technology, like the smartwatch, can help us monitor a number of ‘health indicators’.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/mid-adult-female-consumer-casuals-using-305644691">Tyler Olson/Shutterstock</a></span>
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</figure>
<p>Leading this new development in wearable tech is the <a href="https://moodbeam.co.uk/business">Moodbeam</a> device, which is worn on the wrist. Rather than passively tracking physical health indicators, users of the Moodbeam device are encouraged to press one of two buttons – yellow for “OK” and blue for “not OK” – when they register a mood change, or at scheduled times of the day. The idea behind the device is to add emotional wellbeing to the established health indicator list, processing how our moods fluctuate across a typical day. </p>
<p>Linking to a smartphone application, Moodbeam gives an overview of “mood moments”, which aim to help users spot trends and patterns in their mental health over time. Users can also enter journal entries as well as pressing the wearable’s buttons, and this may facilitate greater self-awareness and better emotional literacy – helping users come to terms with bad habits, or moments in their days which make them feel “not OK”.</p>
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<p>At the moment, Moodbeam is primarily marketed as a digital solution for employers to check in with their remote-working staff – effectively giving workers an opportunity to register their emotional upsets when working from home. But this system raises worrying questions about privacy and employer surveillance – and that’s before we’ve properly studied whether mental health wearables might actually cause more harm than good.</p>
<h2>Instructive or invasive?</h2>
<p>Our <a href="https://mhealth.jmir.org/2019/11/e14946">previous research</a> has dealt with mood monitoring. We looked at how people living with chronic obstructive pulmonary disease responded to a monthly mood questionnaire as part of a wider digital intervention. We found that more than half of participants reported rising mood scores across 12 months. </p>
<p>This finding would not have been captured had mood not been recorded as a data point, highlighting the benefit of monitoring mood in patient groups. Even more frequent monitoring, with devices like the Moodbeam, may help people better understand their emotional wellbeing, while also providing additional insights to inform mental health interventions on the part of medical professionals. </p>
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Read more:
<a href="https://theconversation.com/do-we-really-need-to-walk-10-000-steps-a-day-153765">Do we really need to walk 10,000 steps a day?</a>
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<p>On the other hand, we know employees haven’t responded well to having their feelings monitored in the past. In a <a href="https://doi.org/10.1186/s12889-016-3323-3">focus group</a> exploring perceptions towards wellbeing wearables in the workplace, truck drivers expressed scepticism about whether employers truly cared about their health – seeing it as a “tick box exercise” more for the benefit of employer reputation than employee wellbeing. </p>
<p>It’s easy to imagine wearables like Moodbeam causing employees anxiety and provoking fears about “what happens next” after they press a Moodbeam button – especially the “not OK” one. It’ll be important for companies to be clear about how such data will be used, setting out policies that explain how they’ll respond to negative feelings in their workforce. Privacy remains a concern for Moodbeam data, which is currently <a href="https://www.bbc.co.uk/news/business-55637328">shared at an individual level</a> with employers.</p>
<figure class="align-center ">
<img alt="An office worker in a chair sits back with their hands hend their head looking at their screen" src="https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/383010/original/file-20210208-19-102mro3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Employees could use wellbeing monitors to tell their managers how they feel.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/calm-businesswoman-office-worker-holding-hands-1322061182">fizkes/Shutterstock</a></span>
</figcaption>
</figure>
<p>Beyond the workplace, it’s unclear whether the “OK or not OK” approach promoted by Moodbeam is the right one for mental health monitoring. Emotionally literate individuals are able to understand and express a wide spectrum of emotions, many of which may resist grouping into a binary choice of “OK” or “not OK”. And, if users are constantly pressured to judge their emotions, <a href="https://pubmed.ncbi.nlm.nih.gov/28703602/">logging some as negative</a> could lead to negative mental health impacts. Put simply: feeling bad about feeling bad can make you feel even worse. </p>
<p>Moodbeam is yet to publish any data on user engagement and implementation. It’ll be important to see and examine this data, now that wellbeing trackers are looking likely to become another household health indicator – to determine if they’ll be helpful for users, or a sinister form of surveillance for employers.</p>
<p>In the meantime, companies deciding to employ wearables like Moodbeam must give careful consideration to what they do with mood data, and how they plan to use it to actively help their employees. And individual users should engage with this new technology with caution: it may help them map their moods more effectively, but it could also lead them to feel worse about their wellbeing in the long run.</p><img src="https://counter.theconversation.com/content/154313/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Wearables already monitor our physical health – is it time for them to track our mental health too?Maxine Whelan, Assistant Professor - Centre for Intelligent Healthcare, Coventry UniversityCeline Brookes-Smith, PhD Researcher - Centre for Intelligent Healthcare, Coventry UniversityNatalie Bisal, PhD Researcher, Centre for Intelligent Healthcare, Coventry UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1482262020-11-02T22:00:06Z2020-11-02T22:00:06ZWhat the public hopes and fears about the use of AI in health care<figure><img src="https://images.theconversation.com/files/367021/original/file-20201102-21-1l7egvi.jpg?ixlib=rb-1.1.0&rect=7%2C7%2C4985%2C2350&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The growing use of artificial intelligence in health care should be driven by careful consideration of what is important to members of the public.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>There has been increasing interest in using health “big data” for artificial intelligence (AI) research. As such, it is important to understand which uses of health data are supported by the public and which are not.</p>
<p>Previous studies have shown that members of the public <a href="http://doi.org/10.9778/cmajo.20180099">see health data as an asset that should be used for research</a> provided there is <a href="https://doi.org/10.1186/s12910-016-0153-x">a public benefit and concerns about privacy, commercial motives and other risks are addressed</a>.</p>
<p>However, this general support may not extend to health AI research because of concerns about <a href="https://doi.org/10.1038/s42256-019-0020-9">the potential for AI-related job losses and other negative impacts</a>. </p>
<p>Our research team conducted six focus groups in Ontario in October 2019 to learn more about how members of the general public perceive the use of health data for AI research. We found that <a href="http://dx.doi.org/10.1136/bmjopen-2020-039798">members of the public supported using health data</a> in three realistic health AI research scenarios, but their approval had conditions and limits.</p>
<h2>Robot fears</h2>
<p>Each of our focus groups began with a discussion of participants’ views about AI in general. Consistent with the findings from other studies, people had mixed — but mostly negative — views about AI. There were multiple references to malicious robots, like <a href="https://www.imdb.com/title/tt0088247/">the Terminator in the 1984 James Cameron film</a>. </p>
<blockquote>
<p>“You can create a Terminator, literally, something that’s artificially intelligent, or the matrix … it goes awry, it tries to take over the world and humans got to fight this. Or it can go in the absolute opposite where it helps … androids … implants.… Like I said, it’s unlimited to go either way.” (Mississauga focus group participant)</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A robotic arm holding a human skull" src="https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=451&fit=crop&dpr=1 600w, https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=451&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=451&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/367025/original/file-20201102-21-d19x1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Popular culture is full of tales of AI and robots run amok, feeding into concerns about the use of AI in health-care delivery.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Additionally, several people shared their belief that there is already AI surveillance of their own behaviour, referencing <a href="https://www.forbes.com/sites/nathanpettijohn/2019/09/03/of-course-your-phone-is-listening-to-you/">targeted ads that they have received for products they had only spoken privately about</a>.</p>
<p>Some participants commented on how AI could have positive impacts, as in the case of autonomous vehicles. However, most of the people who said positive things about AI also expressed concern about how AI will affect society.</p>
<blockquote>
<p>“It’s portrayed as friendly and helpful, but it’s always watching and listening.… So I’m excited about the possibilities, but concerned about the implications and reaching into personal privacy.” (Sudbury focus group participant)</p>
</blockquote>
<h2>Supporting scenarios</h2>
<p>In contrast, focus group participants reacted positively to three realistic health AI research scenarios. In one of the scenarios, some perceived that health data and AI research could actually save lives, and most people were also supportive of two other scenarios which didn’t include potential lifesaving benefits. </p>
<p>They commented favourably about the potential for health data and AI research to generate knowledge that would otherwise be impossible to obtain. For example, they reacted very positively to the potential for an AI-based test to save lives by identifying origin of cancers so that treatment can be tailored. Participants also noted practical advantages of AI including the ability to sift through large amounts of data, perform real-time analyses and provide recommendations to health care providers and patients. </p>
<blockquote>
<p>When you can reach out and have a sample size of a group of ten million people and to be able to extract data from that, you can’t do that with the human brain. A group, a team of researchers can’t do that. You need AI. (Mississauga focus group participant)</p>
</blockquote>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/Q0kGcTI3NcY?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A CBC report on the future of AI in health care.</span></figcaption>
</figure>
<h2>Protecting privacy</h2>
<p>The focus group participants were not positively disposed towards all possible uses of health data in AI research. </p>
<p>They were concerned that the health data provided for one health AI purpose might be sold or used for other purposes that they do not agree with. Participants also worried about the negative impacts if AI research creates products that lead to lack of human touch, job losses and a decrease in human skills over time because people become overly reliant on computers.</p>
<p>The focus group participants also suggested ways to address their concerns. Foremost, they spoke about how important it is to have assurance that privacy will be protected and transparency about how data are used in health AI research. Several people stated the condition that health AI research should create tools that function in support of humans, rather than autonomous decision-making systems.</p>
<blockquote>
<p>“As long as it’s a tool, like the doctor uses the tool and the doctor makes the call…it’s not a computer telling the doctor what to do.” (Sudbury focus group participant)</p>
</blockquote>
<h2>Involving members of the public in decisions about health AI</h2>
<p>Engaging with members of the public took time and effort. In particular, considerable work was required to develop, test and refine realistic, plain language <a href="https://bmjopen.bmj.com/content/bmjopen/10/10/e039798/DC2/embed/inline-supplementary-material-2.pdf?download=true">health AI scenarios</a> that deliberately included potentially contentious points. But there was a large return on investment.</p>
<p>The focus group participants — none of whom were AI experts — had some important insights and concrete suggestions about how to make health AI research more responsible and acceptable to members of the public. </p>
<p>Studies like ours can be important inputs into policies and practice guides for health data and AI research. Consistent with the <a href="https://recherche.umontreal.ca/english/strategic-initiatives/montreal-declaration-for-a-responsible-ai/">Montréal Declaration for Responsible Development of AI</a>, we believe that researchers, scientists and policy makers need to work with members of the public to take the science of health AI in directions that members of the public support. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-montreal-declaration-why-we-must-develop-ai-responsibly-108154">The Montréal Declaration: Why we must develop AI responsibly</a>
</strong>
</em>
</p>
<hr>
<p>By understanding and addressing public concerns, we can establish trustworthy and socially beneficial ways of using health data in AI research.</p><img src="https://counter.theconversation.com/content/148226/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>P. Alison Paprica receives funding from the Canadian Institutes of Health Research and other research funders. The Vector Institute funded the research described in this article. She is affiliated with the University of Toronto, ICES and Health Data Research Network Canada, and was affiliated with the Vector Institute until January 2020. </span></em></p><p class="fine-print"><em><span>Melissa McCradden does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The use of artificial intelligence in health care is on the rise, and the concerns of the public need to be considered in developing policy that regulates its application.P. Alison Paprica, Assistant Professor, Institute for Health Policy, Management & Evaluation, University of TorontoMelissa McCradden, Assistant Professor, Clinical Public Health, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1483392020-10-22T03:49:47Z2020-10-22T03:49:47ZHow do we know statistics can be trusted? We talked to the humans behind the numbers to find out<p>In April, as the coronavirus pandemic was gathering force around the world, reporters asked Brendan Murphy, then Australia’s Chief Medical Officer, about international case numbers. In his answer, he made an interesting comment:</p>
<blockquote>
<p>The only numbers I have total faith in are the Australian numbers.</p>
</blockquote>
<p>“Faith” might seem an odd word to use about about official statistics. But in our research, which involves talking to statisticians, public servants and journalists who produce and communicate the statistics that govern our lives, people say overwhelmingly that faith and trust are essential parts of what makes statistics useful. </p>
<p>Despite the objective and impartial appearance of statistics, it is a web of people and human processes that makes them trustworthy.</p>
<h2>When trust falters</h2>
<p>The COVID-19 pandemic has shown us the importance of numbers we can rely on. In many cases, early problems in data management have been indicators of bigger problems to come.</p>
<p>In the United Kingdom, a lack of local case data was hindering public efforts <a href="https://www.ft.com/content/301c847c-a317-4950-a75b-8e66933d423a">as early as June</a>. By October, it emerged that some <a href="https://theconversation.com/why-you-should-never-use-microsoft-excel-to-count-coronavirus-cases-147681">16,000 cases had been lost</a> from national reporting due to sloppy data management.</p>
<p>In Australia, the quality of COVID-19 responses in different states has broadly reflected <a href="https://www.themandarin.com.au/109069-victoria-opens-up-catalogue-of-government-apis-following-lead-of-nsw/">existing perceptions</a> of the quality of each state’s published data.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1275224944293457920"}"></div></p>
<p>New South Wales was celebrated early on by data scientists for its <a href="https://twitter.com/NickEvershed/status/1239861590725451777">responsiveness</a> and <a href="https://twitter.com/NickEvershed/status/1285345350421635073">transparency</a> in data management, long before Prime Minister Scott Morrison’s September comment that the state’s contact tracing was the “<a href="https://www.abc.net.au/news/2020-09-08/why-pm-says-nsw-is-gold-standard-in-covid-19-control/12636890">gold standard</a>”.</p>
<p>Meanwhile, inconsistencies in Victoria’s data management — such as irregular definitions of “local” and “community” transmission, and confusion over the definition of “<a href="https://webarchive.nla.gov.au/awa/20200710145504/http://pandora.nla.gov.au/pan/182166/20200711-0048/covidlive.com.au/faqs.html">routine testing</a>” — were <a href="https://twitter.com/migga/status/1304573530747604999">rankling data scientists</a> back in June, before the state’s mystery cases blew up into a second wave. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1308582232236253185"}"></div></p>
<h2>Governing by numbers</h2>
<p>Public statistics play a huge role in our lives. Political staffers we have interviewed in our research explained how the “mere presence of any kind of numbers” seems to make people more trusting of any claim. </p>
<p>Enthusiasm for <a href="https://www.science.org.au/news-and-events/news-and-media-releases/australias-leading-scientists-call-data-underpinning-covid-19-decisions-made-public">decisions made “on data”</a> often relies on the image of statistics having what philosophers call “<a href="https://plato.stanford.edu/entries/scientific-objectivity/#MeaQua">mechanical objectivity</a>”. By this logic, statistical results are essentially produced by machines or mechanical processes, so decisions based on data can be routine, apolitical, unbiased and incontestable. </p>
<p>But talking to the people behind our national numbers reveals how official statistics are in fact the product of expertise, immense resources, personal judgement calls, and trust.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=418&fit=crop&dpr=1 600w, https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=418&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=418&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=525&fit=crop&dpr=1 754w, https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=525&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/364891/original/file-20201022-21-92iwts.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=525&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Experts say published statistics may represent the visible tip of an iceberg of sources and stories that went into their production.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>Analysts we spoke to described official statistics as “icebergs” concealing vast tangles of sources and stories. Statisticians often used words like “instinct” and “vibe” in explaining how they check data sources and rely on long-term relationships to gather figures. One public servant summed up the situation neatly: </p>
<blockquote>
<p>A lot of personal relationships are stringing together government statistical work.</p>
</blockquote>
<p>The process of transforming real life into tables of data takes expert human intervention at every stage. These interventions can result in vastly different answers to the same initial questions. As the answers often form the bedrock of public decision-making, it becomes crucial we can trust the people who make the decisions behind the scenes.</p>
<h2>“Total faith” in Australian numbers</h2>
<p>When the Statistical Society of London was founded in 1834, discussion of interpretation or “opinion” was <a href="https://www.jstor.org/stable/230606">banned</a> at its meetings. Modern statisticians have a much greater understanding of the importance of how people feel about data: the theme of this year’s <a href="https://worldstatisticsday.org/2020/blog/world-statistics-day-2020-launch.html">World Statistics Day</a> was “Connecting the world with data we can trust”.</p>
<p>But trusting “data” buries the work of the people who create statistics. In practice, they are the ones we are trusting.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/statistics-is-more-than-a-numbers-game-it-underpins-all-sciences-22256">Statistics is more than a numbers game – it underpins all sciences</a>
</strong>
</em>
</p>
<hr>
<p>In Australia, at least, we trust them a lot. Murphy’s “total faith” in “Australian numbers” is reflected in a <a href="https://www.abs.gov.au/ausstats/abs@.nsf/mf/1014.0">2020 survey</a> conducted by the Australian Bureau of Statistics, which found 85% of the general community trust ABS statistics. The figure is even higher among “informed users”: a near-unanimous 99%.</p>
<p>Our communal faith in the numbers produced by the ABS reflects a web of trust and relationships built over decades.</p>
<h2>Why trust matters</h2>
<p>For many policy issues, such as unemployment, ABS statistics are taken as our absolute measure of reality. In these cases, the fact that 99% of informed users trust the numbers is what lets government and society keep functioning.</p>
<p>ABS data forms a shared basis for discussion. One analyst told us it’s not just trust in the bureau’s expertise that creates trust in the data — it’s also “because everybody else is using it as well”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-you-should-never-use-microsoft-excel-to-count-coronavirus-cases-147681">Why you should never use Microsoft Excel to count coronavirus cases</a>
</strong>
</em>
</p>
<hr>
<p>Those who work with public statistics agree these networks of trust — both between institutions like the ABS and the Australian public, and between individual academics, public servants, statisticians and journalists — rely on day-to-day honesty and responsiveness.</p>
<p>Transparency and consistency are essential. Statisticians and journalists alike emphasised that even data formatting plays a role in building trust. One journalist we interviewed talked about a health agency releasing coronavirus statistics as PDF files emailed to a private list early in the pandemic, describing it as “a ridiculous situation” that created extra work for the journalist to make the numbers clear and accountable in public. (State governments have since improved on this, generally making daily case numbers publicly available online.)</p>
<h2>Long-term trust</h2>
<p>Our response to future crises, whether the next pandemic or the impacts of climate change, will rely on the strong communal web of trust in our statistics.</p>
<p>Statistical failures, like the UK <a href="https://www.theguardian.com/politics/2020/oct/05/how-excel-may-have-caused-loss-of-16000-covid-tests-in-england">losing 16,000 cases</a> or the United States <a href="https://www.nytimes.com/2020/04/05/us/coronavirus-deaths-undercount.html">massively undercounting</a> coronavirus deaths, damage public trust in government. When institutions can prove their statistics are <a href="https://www.griffithreview.com/articles/science-in-an-age-of-scepticism/">trustworthy</a>, the public are more willing to follow directives based on those statistics.
How do we know we can trust statistics? We talked to the humans behind the numbers to find out</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-promise-and-problems-of-including-big-data-in-official-government-statistics-106440">The promise and problems of including 'big data' in official government statistics</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/148339/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Samantha Vilkins is supported by an Australian Government Research Training Program (RTP) Scholarship</span></em></p><p class="fine-print"><em><span>Sujatha Raman receives funding from two research projects: the CSIRO-ANU joint-funded research collaboration in responsible innovation and from the Wellcome Trust-CSIRO project 'Talking about gene drive'. However, neither project is connected to research reported in this article. </span></em></p><p class="fine-print"><em><span>Will J Grant does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The COVID-19 pandemic has highlighted how much modern societies are governed by statistics. Despite their objective appearance, these numbers gain their strength from very human relationships.Samantha Vilkins, PhD candidate, Australian National UniversitySujatha Raman, Associate Professor, Australian National UniversityWill J Grant, Senior Lecturer, Australian National Centre for the Public Awareness of Science, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1478052020-10-15T12:38:23Z2020-10-15T12:38:23ZWhat is HIPAA? 5 questions answered about the medical privacy law that protects Trump’s test results and yours<figure><img src="https://images.theconversation.com/files/363533/original/file-20201014-21-q2f1h4.jpg?ixlib=rb-1.1.0&rect=473%2C0%2C6875%2C4912&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Doctors can share your medical information, with your permission.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/bad-news-royalty-free-image/486418295">sturti/E+ via Getty Images</a></span></figcaption></figure><p><em>When President Trump was hospitalized with COVID-19, his doctor pointed to “<a href="https://www.cnn.com/2020/10/07/politics/hipaa-trump-conley/index.html">HIPAA rules and regulations</a>” as the reason he couldn’t speak more freely about Trump’s condition. HIPAA is a medical privacy law, but people often misunderstand what it does and doesn’t do.</em></p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1313205926309093378"}"></div></p>
<p><em>Margaret Riley is a <a href="https://www.law.virginia.edu/faculty/profile/mf9c/1202931">law professor at the University of Virginia</a> who specializes in health law. She spends a lot of time teaching future lawyers and medical professionals how medical privacy laws work. Here are the basics.</em></p>
<h2>1. What is HIPAA and why did Congress pass it?</h2>
<p>The <a href="https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html">Health Insurance Portability and Accountability Act’s</a> Privacy Rule is a federal law that <a href="https://www.hipaajournal.com/when-was-hipaa-enacted/">went into force in 2003</a>. The need for such a law had been underscored when tennis star <a href="https://www.nytimes.com/1992/04/09/sports/an-emotional-ashe-says-that-he-has-aids.html">Arthur Ashe’s HIV status was revealed publicly</a> and country music star <a href="http://www.cmt.com/news/1475729/medical-worker-sentenced-over-wynette-medical-records/">Tammy Wynette’s health records were sold</a> to tabloids for a few thousand dollars. People were also starting to worry about genetic privacy. And Congress recognized that the internet would make it easier for health care privacy breaches to occur.</p>
<p>The law prohibits health care providers and businesses and people working with them – including administrative staff, laboratories, pharmacies, health insurers and so on – from disclosing your health information without your permission. That includes information about your COVID-19 symptoms and test results – though there are some exceptions.</p>
<h2>2. Is all my medical info protected by HIPAA?</h2>
<p>No, HIPAA protects only health care information that is held by specific kinds of health care providers. For example, health care data that may be on your Apple Watch or Fitbit are usually not covered by HIPAA. Similarly, genetic data you enter on websites like Ancestry.com are not covered by HIPAA.</p>
<p>Even some apps that do things like help you maintain your blood sugar may not be covered by HIPAA if you aren’t using them at the direction of your health care provider. Other laws or agreements like the privacy disclosures required on many apps (although <a href="https://theconversation.com/nobody-reads-privacy-policies-heres-how-to-fix-that-81932">many people don’t read them</a>) may protect that information, but HIPAA does not.</p>
<p>Employers are generally not covered health providers, so HIPAA does not apply to them. If necessary to protect others, your work could share that you have an illness. That said, other laws like the Americans with Disabilities Act may prevent your employer from disclosing identifiable health information about you that you may have shared with them.</p>
<h2>3. Who can disclose what under HIPAA?</h2>
<p>HIPAA gives you the right to control your health information disclosures so you can tell your health care provider what to share. </p>
<p>For example, you may be willing to have your health care provider share some of your health information with family members, but you might not want to share all of it; you can tell your health care provider not to share any stigmatizing information or procedures that your family might not know about. You need to be very clear with your health care provider if you want to exclude some information. Some information, like psychotherapy notes or giving your data to marketing companies, requires written authorization. </p>
<p>Sometimes people try to use HIPAA as an excuse for actions that it doesn’t in fact cover. In 2020, for instance, some people confronted with rules about wearing masks in stores assert that they don’t need to wear one and <a href="https://www.usatoday.com/story/news/factcheck/2020/07/19/fact-check-asking-face-masks-wont-violate-hipaa-4th-amendment/5430339002/">don’t need to explain why because of HIPAA</a>. That’s not actually how this privacy law works.</p>
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<a href="https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="exterior of a medical center with mask sign" src="https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/363537/original/file-20201014-21-1mxfqp8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Even during the pandemic, your personal medical information is largely protected.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/bad-news-royalty-free-image/486418295">Spencer Plat/Getty Images News via Getty Images</a></span>
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<h2>4. Could my health care provider be required to disclose any of my info without my permission?</h2>
<p><a href="https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html">There are exceptions</a> to HIPAA’s nondisclosure requirements. For example, HIPAA regulations allow covered health care providers to disclose patient information to help treat another person, to protect public health and for certain law enforcement purposes.</p>
<p>There are additional exceptions that apply during a pandemic. For instance, while health departments may have access to information about people in their district who’ve tested positive for COVID-19, HIPAA and other privacy laws require them not to release any more information than is needed to keep people safe. So, health departments will provide information about how many people have tested positive and how many people are hospitalized, but they won’t release any names to the general public. Health department contact tracers may reveal identities of individuals if it’s really necessary to alert specific people that they may have been exposed.</p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>HIPAA covers President Trump just as it does you and me. There may be good reasons that people want to know more about the president’s health, but his health providers can provide the public only with information about his health that he has allowed them to share. They shouldn’t say anything that isn’t true, but they can certainly omit information.</p>
<h2>5. What if someone violates my rights under HIPAA?</h2>
<p>Only the government can bring a claim if an individual’s protected health information is breached. So to bring a federal claim, you would need to work with the Office of Civil Rights at the U.S. Department of Health and Human Services. You may be able to sue under state law and use the breach of your HIPAA rights as evidence.</p>
<p>Some people who are particularly worried about their privacy may ask health care providers to sign a nondisclosure agreement that gives them additional claims and the right to sue directly if there is a breach.</p><img src="https://counter.theconversation.com/content/147805/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Margaret Riley does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A health law expert explains what the regulation does and doesn’t protect.Margaret Riley, Professor of Law, Public Health Sciences, and Public Policy, University of VirginiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1476812020-10-07T12:48:56Z2020-10-07T12:48:56ZWhy you should never use Microsoft Excel to count coronavirus cases<figure><img src="https://images.theconversation.com/files/362151/original/file-20201007-16-13r8r7p.jpg?ixlib=rb-1.1.0&rect=16%2C58%2C5545%2C3652&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/new-york-usa-august-18-2017-699112366">PixieMe/Shutterstock</a></span></figcaption></figure><p>Public Health England has admitted that <a href="https://www.bbc.com/news/uk-54412581">16,000 confirmed coronavirus cases</a> in the UK were missed from daily figures being reported between September 25 and October 2. The missing figures were subsequently added to the daily totals, but given the importance of these numbers for monitoring the outbreak and making key decisions, the results of the error are far-reaching. </p>
<p>Not only does it lead to underestimating the scale of coronavirus in the UK, but perhaps more important is the subsequent delay in entering the details of positive cases into the NHS Test and Trace system which is used by a team of contact tracers. Although all those who tested positive had been informed of their results, other people in close contact with them and potentially at risk of exposure were not immediately followed up (ideally within 48 hours). This was a serious error. What could have caused it?</p>
<p>It emerged later that that day a “technical glitch” was to blame. To be more specific, the lab test results were being transferred to Excel templates. The templates hit a limit in the number of rows they could handle and then failed to update with more cases added. The issue was resolved with all new cases added to the totals reported over the weekend by breaking the data down across smaller spreadsheets.</p>
<p>The issue may have been fixed, but people’s confidence in the testing system in place in England will undoubtedly take a knock. It’s also likely that politicians and media will use this as political ammunition to argue the incompetence of government and Public Health England. Is this the right response? What should we take away from this mistake?</p>
<h2>An avoidable mistake</h2>
<p>We should not forget that the government and public health workers are doing an incredibly challenging and demanding job dealing with a pandemic. But this kind of mistake was avoidable. We live in a world of big data, with artificial intelligence and machine learning permeating all aspects of our lives. We have smart factories and smart cities; we have self-driving cars and machines trained to exhibit human intelligence. And yet Public Health England used Microsoft Excel as an intermediary to manage a large volume of sensitive data. And herein lies the problem.</p>
<p>Although Excel is popular and commonly used for analysis, it has several limitations that make it unsuitable for large amounts of data and more sophisticated analyses. </p>
<p>The companies that analysed the swab tests to identify who had the virus submitted their <a href="https://www.bbc.co.uk/news/uk-54422505">results as comma-separated text files to PHE</a>. These were then ingested into Excel templates to be uploaded to a central system to be made available to the Test and Trace team and government. Although today’s Excel spreadsheets can handle 1,048,576 rows and 16,384 columns, developers at PHE used an older Excel file format (XLS instead of XLSX) resulting in each template being able to store only around 65,000 rows of data (or around 1,400 cases). When the limit was reached, any further cases were left off the template and therefore positive cases of coronavirus were missed in the daily reporting. </p>
<p>The bigger issue is that, in light of the data-driven and technologically advanced age in which we live, that a system based on shipping around Excel templates was even deemed suitable in the first place. Data engineers have for a long time been supporting businesses with managing, transforming and serving up data, and developing methods for building efficient, robust and accurate data pipelines. Data professionals have also developed approaches to information governance, including assessing data quality and developing appropriate security protocols.</p>
<p>For this kind of custom application there are plenty of data management technologies that could have been used, ranging from on-site to cloud-based solutions that can scale and provide managed data storage for subsequent reporting and analysis. The Public Health England developers no doubt had some reason to transform the text files into Excel templates, presumably to fit with legacy IT systems. But avoiding Excel together and shipping the data from source (with appropriate cleaning and checks) into the system would have been better and reduced the number of steps in the pipeline.</p>
<h2>The blame game</h2>
<p>Despite the benefits and widespread use of using Excel, it is not always the right tool for the job, especially for a data-driven system with such an important function. You can’t accurately report, model or make decisions on inaccurate or poor quality data. </p>
<p>During this pandemic we are all on a journey of discovery. Rather than point the finger and play the blame game, we need to reflect and learn from our mistakes. From this incident, we need to work on getting the basics right – and that includes robust data management. Perhaps rather concerning are <a href="https://www.bbc.co.uk/news/technology-54423988">reports</a> that Public Health England is now breaking the lab data into smaller batches to create a larger number of Excel templates. This seems a poor fix and doesn’t really get to the root of the problem – the need for a robust data management infrastructure.</p>
<p>It is also remarkable how quickly technology or the algorithm is blamed (especially by politicians), but herein lies another fundamental issue – accountability and taking responsibility. In the face of a pandemic we need to work together, take responsibility, and handle data appropriately.</p><img src="https://counter.theconversation.com/content/147681/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Clough works part-time for Peak Indicators, a UK-based Business Intelligence & Analytics company. </span></em></p>There are any more sophisticated programs available for managing health data. Why did Public Health England use Microsoft Excel?Paul Clough, Professor in Search & Analytics, University of SheffieldLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1383722020-09-14T20:52:34Z2020-09-14T20:52:34ZRace-based COVID-19 data may be used to discriminate against racialized communities<figure><img src="https://images.theconversation.com/files/357528/original/file-20200910-14-1o27r9i.jpeg?ixlib=rb-1.1.0&rect=0%2C0%2C4608%2C3069&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Calls for more race-based data fail to consider the many risks associated with collecting it. </span> <span class="attribution"><span class="source">(Julian Wan/Unsplash) </span></span></figcaption></figure><p>For some, the current demands for race-based data reflect a desire to ensure the experiences of anti-Black discrimination in Canada during the pandemic are not denied or erased. But there are other more powerful forces clamouring for Canada’s race-based data, and the well-being of Black communities is not at the top of their minds.</p>
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Read more:
<a href="https://theconversation.com/collecting-race-based-data-during-coronavirus-pandemic-may-fuel-dangerous-prejudices-137284">Collecting race-based data during coronavirus pandemic may fuel dangerous prejudices</a>
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<p>In April, the Ontario government posted the <a href="https://www.ontariocanada.com/registry/showAttachment.do?postingId=32590&attachmentId=43697">Digital Health Information Exchange Policy</a> that comes into effect on Oct. 1. The policy makes it easier for someone’s data to move among companies, organizations and institutions, and without someone’s knowledge or consent.</p>
<p>Health data is a hot commodity. Global earnings related to health data management systems — also known as electronic health and electronic medical records (EHRs/EMRs) — <a href="https://www.thechronicleherald.ca/news/local/with-billions-at-stake-huge-companies-bid-for-electronic-health-records-worldwide-253345/">are forecast to exceed US$36 billion by 2021</a>.</p>
<p><a href="https://blog.definitivehc.com/top-canadian-hospitals-ehr-vendors">In Canada, five companies dominate the EHR/EMR market</a>, with Google about to join. As the largest data mining company in the world, <a href="https://www.theverge.com/2020/3/10/21173077/congress-antitrust-google-search-klobuchar-bill-letter-monopoly">Google’s ability to gobble up the competition is unparalleled</a>.</p>
<p><a href="https://www.thestar.com/news/investigations/2019/02/20/medical-record-software-companies-are-selling-your-health-data.html">Currently, personal health data has been rapidly repurposed without consent, in ways previously not imagined</a>. This is amplified by the <a href="https://www.thestar.com/news/investigations/2019/02/21/privacy-commissioner-to-investigate-sale-of-health-data.html">potential for profit</a>.</p>
<p>Amazon’s deal-making during the pandemic <a href="https://pressprogress.ca/federal-government-wont-disclose-details-of-new-contract-with-amazon-to-manage-canadas-covid-19-supplies/">now includes a new contract with Canada’s federal government for personal protective equipment (PPE)</a>. That puts Amazon right in the middle of our publicly funded universal health care logistics, with access to a robust cache of data.</p>
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<a href="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Ontario Premier Doug Ford looks on as Ontario Health Minister Christine Elliott stands at a podium" src="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Ontario Premier Doug Ford looks on as Ontario Health Minister Christine Elliott announces the COVID Alert application during the daily briefing at Queen’s Park in Toronto in June 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Jack Boland</span></span>
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<h2>The false promise of anonymity</h2>
<p>Tech, privacy and health data experts warn that we must remain vigilant and cautious with tech companies. Investigative journalists <a href="https://thelogic.co/news/exclusive/foreign-tech-giants-have-more-than-tripled-their-lobbying-since-justin-trudeau-became-prime-minister/">have already uncovered secret deals between the government and data-driven tech corporations</a>, <a href="https://www.theguardian.com/technology/2019/nov/12/google-medical-data-project-nightingale-secret-transfer-us-health-information">unethical conduct</a> and <a href="https://www.thestar.com/news/canada/2017/07/29/doctors-use-this-software-during-patient-visits-now-big-pharma-is-tapping-it-to-sell-their-drugs.html">failed track records when it comes to health and data privacy</a>. </p>
<p>Claims that <a href="https://www.careersinfosecurity.com/patient-data-be-truly-de-identified-for-research-a-12708">our health data are protected due to de-identification or anonymization ring hollow</a>. Data can be re-identified or de-anonymized by <a href="https://techcrunch.com/2019/07/24/researchers-spotlight-the-lie-of-anonymous-data/">linking health-care data to other information</a>. As privacy lawyer David Holtzman indicated, “<a href="https://www.careersinfosecurity.com/patient-data-be-truly-de-identified-for-research-a-12708">the widespread availability of new tools and technologies makes the current de-identification standards meaningless</a>.” </p>
<p>So why are we being lulled into a false sense of security?</p>
<p>The European Union and the United Kingdom are protecting their citizens’ data, halting the predatory behaviour of tech companies within their jurisdictions. Canada is wide open, comparatively speaking, and as such, Canadian data has become an attractive target for companies seeking to profit from health data. </p>
<p>These companies use the data to inform predictive algorithms used by health systems planners. This is of particular concern because it has been repeatedly demonstrated that <a href="https://www.npr.org/2018/01/26/580617998/cathy-oneil-do-algorithms-perpetuate-human-bias">algorithms reinforce bias</a>. Algorithms are increasingly <a href="https://www.theguardian.com/science/2016/sep/01/how-algorithms-rule-our-working-lives">dictating our choices, interests, insurance rates, access to loans, housing, job opportunities and more</a>.</p>
<h2>Data harms and benefits</h2>
<p>Research by scholars like sociologist <a href="https://www.wiley.com/en-ca/Race+After+Technology:+Abolitionist+Tools+for+the+New+Jim+Code-p-9781509526437">Ruha Benjamin</a> and mathematician <a href="https://weaponsofmathdestructionbook.com/">Cathy O'Neil</a> reveal how data collection and discriminatory algorithms pose the <a href="https://www.scientificamerican.com/article/will-democracy-survive-big-data-and-artificial-intelligence">greatest threat to minoritized people and democratic processes</a>.</p>
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<figcaption><span class="caption">A conversation about data between the author and mathematician Cathy O'Neil.</span></figcaption>
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<p>Benjamin’s scholarship reveals that Black communities are <a href="https://www.theguardian.com/technology/2019/oct/03/google-data-harvesting-facial-recognition-people-of-color">the primary targets and recipients of algorithmic racism</a>. Without laws that protect data from data brokers, we have no way of knowing where or how our data is being used, and by whom.</p>
<p>Adding more <a href="https://www.vice.com/en_ca/article/m7jv7q/edmonton-community-solutions-accelerator-between-police-and-tech-has-activists-worried">race-based markers to small populations</a> — like the Black population in Canada — increases the risk of re-identification by corporations, surveillance agencies and tech companies that <a href="https://www.technologyreview.com/2019/10/08/75349/meet-americas-newest-military-giant-amazon/">hold massive global, military and security contracts</a>.</p>
<h2>Impact in Ontario</h2>
<p>If the Ontario government continues on the austerity path and <a href="https://www.theglobeandmail.com/canada/article-ford-government-reveals-health-services-to-be-delisted-from-ohip/">delists additional health services</a>, what are the implications — especially for marginalized populations — of adding detailed socio-demographic data to health records? </p>
<p>For example, how will data labelled as Black, poor, disabled or all three impact a person’s insurance rates? Current legislation will not protect patients from <a href="https://www.forbes.com/sites/lanceeliot/2020/01/04/overcoming-racial-bias-in-ai-systems-and-startlingly-even-in-ai-self-driving-cars/">this type of algorithmic discrimination</a>. Only updated data laws can protect us from <a href="https://www.technologyreview.com/s/612876/this-is-how-ai-bias-really-happensand-why-its-so-hard-to-fix/">the perils of monetized data and the discriminatory algorithms they are generating</a>.</p>
<p>Right now, the data pouring in about how COVID-19 is affecting Black communities in the United States has not affected the rising death toll. Predictably, in the U.S., race-based data has already been used to <a href="https://www.technologyreview.com/2020/06/03/1002589/technology-perpetuates-racism-by-design-simulmatics-charlton-mcilwain/">undermine Black people</a>, <a href="https://www.queensu.ca/gazette/stories/collecting-race-based-data-during-pandemic-may-fuel-dangerous-prejudices">their health and dignity</a>. And in Canada, it’s more of the same: in Nova Scotia, <a href="https://www.halifaxexaminer.ca/province-house/daily-covid-19-update-covid-19-hits-the-black-community-with-a-predictable-racist-response/">two African Canadian communities were singled out by the province’s</a> chief medical officer of health. The political will to act and protect Black people in the U.S. and in Canada is still missing. </p>
<h2>Protecting rights</h2>
<p>At minimum, Canadians must demand new data laws, enforceable penalties and the resources to be proactive. </p>
<p>If the purpose of collecting race-based data is to address anti-Black racism, equity or accountability, then the <a href="https://rede4blacklives.com/blog/2020/05/29/covid-symposium-part-2/">priority must be anti-Black racism</a>. </p>
<p>Do the risks of race-based data outweigh the harms? The stakes are much higher, and <a href="https://www.democracynow.org/2020/6/26/racist_facial_recognition_technology_joy_buolamwini">more insidious and dangerous</a> than we were led to believe. </p>
<p>Personal information, including health data, must be protected whether it is identifiable, de-identified or anonymized. Laws, regulation, policies and substantive enforceable penalties are the minimum pre-conditions that must be in place before more race-based data is collected and circulated.</p><img src="https://counter.theconversation.com/content/138372/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>LLana James does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The COVID-19 pandemic has led to calls for the collection of race-based data. But the risks of algorithmic discrimination must be addressed.LLana James, PhD Candidate, Faculty of Medicine, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1419782020-09-10T17:53:30Z2020-09-10T17:53:30ZHealth data collected during the coronavirus pandemic needs to be managed responsibly<figure><img src="https://images.theconversation.com/files/357265/original/file-20200909-18-1y4s2b0.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4300%2C2240&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Managing large datasets of sensitive health information requires accountability.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>The novel coronavirus has generated unprecedented urgency to learn from health data. There is a variety of data that are crucial to the pandemic response, but not all of these data are collected or governed by the same organization. For example, COVID-19 test results aren’t necessarily kept in the same database as data about medical conditions, medications or social determinants of health.</p>
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Read more:
<a href="https://theconversation.com/your-electronic-health-data-understanding-the-different-records-systems-and-how-they-connect-124692">Your electronic health data: Understanding the different records, systems and how they connect</a>
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<p>It is critically important that data relevant to COVID-19 are brought together — and governed and managed in a responsible and trustworthy manner — so that they can be used for research and analysis. This will require new kinds of collaborations, one of which is data trusts. </p>
<h2>Guidance for data trusts</h2>
<p>In December 2019, a group of 19 people representing 15 Canadian organizations and data infrastructure initiatives came together with the goal of developing practical guidance for data trusts. We defined a data trust as a repeatable mechanism or approach to sharing data in a timely, fair, safe and equitable way. This definition is intended to be broad and could apply to both data institutions (like the organizations that make up <a href="https://www.hdrn.ca/en/covid">Health Data Research Network Canada</a>) and large datasets accessed by multiple researchers. </p>
<p>Based on our first-hand experience with data governance and management, and concepts from the literature, we identified <a href="https://doi.org/10.23889/ijpds.v5i1.1353">12 essential requirements for data trusts</a>, which have been published in the <em>International Journal of Population Data Science</em>. </p>
<p>We used a minimum specifications requirements approach, where participants brainstormed a list of <em>good to have</em> characteristics. They then asked the question, “Is it possible to have a complete and well functioning data trust without any of these?” and crossed off everything on the list that wasn’t seen as essential.</p>
<p>Our work predated the pandemic, but we believe the 12 requirements are relevant and can serve as a beneficial checklist for new and existing data trusts, including those related to COVID-19. </p>
<h2>Legal foundation</h2>
<p>It is a good idea for everyone to have some knowledge about how their data are protected. There are laws that apply to companies, such as the federal Personal Information Protection and Electronic Documents Act, and others that apply to public sector data, for example Ontario’s Personal Health Information Protection Act and the Freedom of Information and Protection of Privacy Act in British Columbia. </p>
<p>Those in charge of data trusts need more than cursory knowledge of legal requirements. They must be fully aware and compliant with all relevant laws and have legal authority to collect, share and hold data. Understanding legal requirements and authorities can be complex, so groups creating new COVID-19 data trusts should obtain legal advice. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman wearing a face mask looks at her mobile phone." src="https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/357308/original/file-20200909-22-1v49ad0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">There is a growth in the promotion and use of COVID-19 tracking apps, which collect information on potential exposure to the coronavirus.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<h2>Governance and management</h2>
<p>All data trusts — including those associated with apps and websites where people voluntarily enter their COVID-19 symptoms and test results — have a responsibility to ensure that privacy is protected, and that data are secure and not used for purposes that the people who contribute data don’t agree with. For that reason, the majority of our 12 data trust requirements focus on governance and management. </p>
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<strong>
Read more:
<a href="https://theconversation.com/the-public-needs-to-know-why-health-data-are-used-without-consent-123669">The public needs to know why health data are used without consent</a>
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<p>To fulfil the 12 requirements, COVID-19 data trusts would need to have a stated purpose, a governing committee or board, and implemented policies that address important questions, including: What data are available and with what level of detail? Are data downloadable or accessed via secure remote connection? Who can use the data (academic researchers, students, independent analysts, company employees)? Can data infrastructure established in response to COVID-19 also be used to study other diseases and topics? </p>
<p>Data trusts should also establish mandatory training for all data users covering allowed and prohibited activities and require signed data user agreements with enforceable penalties if users breach the data trust terms, for example, by attempting to re-identify anonymized individuals. Our article provides examples of existing training materials and data user agreements that could be a good starting point for COVID-19 data trusts.</p>
<p>There is extensive published guidance about how to govern and manage data trusts, including the <a href="http://dx.doi.org/10.5281/zenodo.897821">Five Safes Framework</a>. However, practically speaking, the workload and expertise required to establish trustworthy data infrastructure may mean that new COVID-19 data trusts are better off partnering with an organization that has experience governing and managing data, rather than starting from scratch.</p>
<h2>Public engagement</h2>
<p>We wholeheartedly support the recent increased focus on public involvement in decisions related to health data, including acknowledgement of the need for the <a href="https://ijpds.org/article/view/1357">public to have a say in data use for COVID-19 research</a>. </p>
<p>We recommend that all data trusts have early and ongoing engagement with members of the public and other data providers, and tailored engagement with groups that have a particular interest in, or would be affected by, an activity of the data trust. </p>
<p>In the case of COVID-19 data trusts in Canada, this could translate into a focused effort to engage and involve people who live or work in <a href="https://theconversation.com/after-covid-19s-tragic-toll-canada-must-improve-quality-of-life-in-long-term-care-homes-139763">long-term care homes</a> and <a href="https://theconversation.com/race-based-health-data-urgently-needed-during-the-coronavirus-pandemic-136822">racialized minorities</a> who have been disproportionately affected by the pandemic.</p>
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<strong>
Read more:
<a href="https://theconversation.com/collecting-race-based-data-during-coronavirus-pandemic-may-fuel-dangerous-prejudices-137284">Collecting race-based data during coronavirus pandemic may fuel dangerous prejudices</a>
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<p>Our paper presents a distillation of concepts from the literature, combined with first-hand knowledge from 15 Canadian initiatives focused on data infrastructure. As we begin to implement and evaluate the 12 requirements, we expect that they will evolve in response to new opportunities and threats. For example, the minimum specs may need to be expanded or modified to adapt to new developments in scientific methods such as artificial intelligence, new data sources such as wearables, changes in public sentiment related to data use and cybersecurity threats.</p>
<p>We look forward to working with members of the public, and with stakeholders from other organizations and countries, to refine the 12 essential requirements and put them into practice for data trusts, including those developed specifically for COVID-19.</p><img src="https://counter.theconversation.com/content/141978/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>P. Alison Paprica receives funding from the Canadian Institutes of Health Research and other research funding agencies.</span></em></p><p class="fine-print"><em><span>Adrian Thorogood receives funding from the Canadian Institutes of Health Research, Genome Canada, and Genome Quebec.</span></em></p><p class="fine-print"><em><span>Alex Ryan works for MaRS Discovery District. His group receives funding from 60 government and corporate partners, including Public Health Agency of Canada, Merck, and the J.W. McConnell Foundation.</span></em></p><p class="fine-print"><em><span>Kimberlyn McGrail receives funding from the Canadian Institutes of Health Research and other research funding agencies. </span></em></p><p class="fine-print"><em><span>Michael J. Schull receives funding from the Canadian Institutes for Health Research. </span></em></p>Data trusts are a key part of a health data infrastructure that manages user and patient information in a responsible, transparent and accountable manner.P. Alison Paprica, Assistant Professor, Institute for Health Policy, Management & Evaluation, University of TorontoAdrian Thorogood, Academic Associate, Centre of Genomics and Policy, McGill UniversityAlex Ryan, Executive-in-Residence, Rotman School of Management, University of TorontoKimberlyn McGrail, Professor of Health Services and Policy Research, University of British ColumbiaMichael J. Schull, Professor, Department of Medicine, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1415642020-09-09T09:39:52Z2020-09-09T09:39:52ZAre men really that much more likely to die from coronavirus? We need better data to be certain<figure><img src="https://images.theconversation.com/files/356965/original/file-20200908-20-u7zm9g.jpg?ixlib=rb-1.1.0&rect=729%2C359%2C6601%2C4322&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-senior-man-wearing-facemasks-during-1690267378">Yuganov Konstantin/Shutterstock</a></span></figcaption></figure><p>Nine months after the coronavirus emerged, there’s still a remarkable lack of understanding about why the severity and course of COVID-19 vary for different people. Part of the problem is that we haven’t prioritised gathering and reporting data in enough detail. Most countries just report the age and sex of people who have died of COVID-19. This isn’t enough if we want a better understanding of the disease. </p>
<p>When looking at basic COVID-19 data, there are patterns that undermine what we think we know, such as men being more at risk, but these remain unexplained without knowing more about the demographics and health conditions of those infected. If we had that information, we’d be able to better investigate, prevent and control COVID-19, just like we are with diseases where richer information is available.</p>
<h2>Detailed data improves health</h2>
<p>Reporting more data so that cases of disease can be broken down into subcategories is known as “disaggregation”. It allows further insight and can give patients better outcomes. Over the last two decades in the US, for example, breaking down the prevalence and outcomes of heart disease and stroke by sex, gender, ethnicity and age has significantly improved how it is managed.</p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/15769762/">Disaggregated data shows</a> that African American patients with heart disease tend to be younger and have multiple related conditions – such as high blood pressure and diabetes – that make heart disease worse. It also shows they have less access to preventive care. This is all critical information for subsequent treatment, and thanks to knowledge gained through disaggregation, is now included in treatment guidelines. These factors could easily otherwise be overlooked.</p>
<p>A similar analysis of detailed data has demonstrated that the effects of cholesterol-lowering statins differ between <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5225129/">European, Asian</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5532994/">African</a> patients. This can lead to more appropriate prescriptions and dosages. </p>
<p>Disaggregated data can also show where biases in treatment lead to disparities in outcomes – for instance, between <a href="https://pubmed.ncbi.nlm.nih.gov/15766815/">men and women</a>, or <a href="https://www.scientificamerican.com/article/racism-in-health-care-isnt-always-obvious/">black patients and white patients</a> – and so highlight where practices need to change.</p>
<h2>COVID-19 death rates a mystery</h2>
<p>With only age and sex data available, we can’t provide these sorts of detailed insights into COVID-19. But unexplained patterns in the data we do have show that there’s more insight to be gained – if we can collect more information. </p>
<p>The following graph – which presents the death rate of over-65s in England and Wales across the first 30 weeks of this year – illustrates this.</p>
<figure class="align-center ">
<img alt="A graph showing how mortality rates for COVID-19 and all other causes in over-65s in the UK changed during the first 30 weeks of 2020" src="https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=465&fit=crop&dpr=1 600w, https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=465&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=465&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=584&fit=crop&dpr=1 754w, https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=584&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/356931/original/file-20200908-18-2j1wcb.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=584&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Data from the UK Office for National Statistics.</span>
<span class="attribution"><span class="license">Author provided</span></span>
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<p>The rate of COVID-19 deaths is shown in red. The rate of death from all other causes in 2020 is in blue. The grey line shows the average of the overall death rate of the previous five years. The data is also broken down by sex: dotted lines for men, solid lines for women.</p>
<p>There is the obvious spike in COVID-19 deaths, rising sharply around week 13 and declining rapidly after week 16. In the weeks around the peak, many more men were dying than women – as shown by the dotted red line peaking higher than the solid one. This observation, also seen in <a href="https://globalhealth5050.org/covid19/men-sex-gender-and-covid-19/">global data</a>, led to the conclusion that men are at greater risk of dying from COVID-19. </p>
<p>Based on this, there’s been lots of speculation as to why. There are theories about why the male immune system may be <a href="https://theconversation.com/why-do-more-men-die-from-coronavirus-than-women-136038">less effective</a> against the virus, why the virus might <a href="https://theconversation.com/ace2-the-molecule-that-helps-coronavirus-invade-your-cells-138369">more easily enter men’s cells</a>, or how <a href="https://coronavirusexplained.ukri.org/en/article/cad0007/">gendered activities, such as smoking</a>, may play a role. </p>
<p>Yet by week 20 on our graph – just ten weeks after the first death – men are no longer dying in much higher numbers than women. The two red lines converge. This change is shown more clearly in the graph below, which shows the ratio of deaths between men and women for this period. </p>
<figure class="align-center ">
<img alt="A graph showing how the male-female death ratio for over-65s in the UK changed during the first 30 weeks of 2020" src="https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=500&fit=crop&dpr=1 600w, https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=500&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=500&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=628&fit=crop&dpr=1 754w, https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=628&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/356932/original/file-20200908-18-edhadr.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=628&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Data from the UK Office for National Statistics. The blue bands are 95% confidence intervals.</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
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<p>The fact that the male-female ratio for COVID-19 deaths isn’t consistent, but rises and then falls, shows that the association between sex and COVID deaths may have been overinterpreted in the early days of the pandemic. Data from the later stages of this pandemic suggests men and women may be equally susceptible to severe disease.</p>
<p>Going back to the first graph, there’s also a sharp rise in the number of non-COVID-19 deaths for both men and women – shown by the blue lines rising above the grey ones. This is “excess mortality” – that is, deaths above and beyond what would be expected based on previous years.</p>
<p>Again, because of a lack of data, the reasons for the striking spike in non-COVID deaths is unknown. Speculative reasoning would suggest a combination of health-service failure, fear of going to the doctor when ill because of a potential increased risk of coronavirus exposure, concerns about over-burdening the health system, or a failure primary care to maintain services for people with chronic diseases. </p>
<p>But the truth is: we don’t know.</p>
<h2>What we should be doing</h2>
<p>Put simply, hospitals need to start collecting and reporting detailed data for COVID-19 patients. This means data on <a href="http://whqlibdoc.who.int/publications/2008/9789241563703_eng.pdf?ua=1">“social determinants”</a> that affect people’s health outcomes – such as race, ethnicity, occupation and socioeconomic status – as well as people’s medical histories and information on pre-existing conditions.</p>
<p>While we know that <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(20)30264-3/fulltext">many medical conditions</a> are associated with severe COVID-19 – <a href="https://www.thelancet.com/journals/landia/article/PIIS2213-8587(20)30238-2/fulltext">diabetes</a>, <a href="https://www.escardio.org/The-ESC/Press-Office/Press-releases/High-blood-pressure-linked-to-increased-risk-of-dying-from-COVID-19">high blood pressure</a> and <a href="https://www.theguardian.com/world/2020/aug/26/obesity-increases-risk-of-covid-19-death-by-48-study-finds">obesity</a> are a few examples – the available data doesn’t show whether appropriately managing these conditions has an effect on COVID-19 severity. If it does, then a clear action for policymakers is providing access to preventive care for the underlying condition.</p>
<p>For researchers to conduct this type of analysis, governments should require hospitals to share the data they collect, including with the World Health Organization – it has already set up a <a href="https://www.who.int/teams/health-care-readiness-clinical-unit/covid-19/data-platform">platform</a> to draw such information together.</p>
<p>With nearly 900,000 deaths worldwide and counting, we cannot continue to work without taking advantage of all the information we can.</p><img src="https://counter.theconversation.com/content/141564/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>If we want to know how COVID-19 works, we need to know more than just the age and sex of who it kills.Pascale Allotey, Director, International Institute for Global Health (UNU-IIGH), United Nations UniversityDaniel D Reidpath, Professor of Population Health, International Centre for Diarrhoeal Disease ResearchNina Schwalbe, Adjunct Assistant Professor of Population and Family Health, Mailman School of Public Health, Columbia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1404072020-08-16T12:12:25Z2020-08-16T12:12:25ZA national health data infrastructure could manage pandemics with less disruption<figure><img src="https://images.theconversation.com/files/351446/original/file-20200806-18-zqb7qb.jpg?ixlib=rb-1.1.0&rect=7%2C0%2C5148%2C3440&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Using data to manage the spread of coronavirus means that work and everyday life could quickly resume.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>If we did not know it before, we know it now: pandemics present dire threats to our lives, similar to climate change and nuclear proliferation. Confronting these threats requires social and technical innovation and the willingness to view potential solutions in entirely new ways.</p>
<p>As Canada struggles with <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/canadas-reponse.html">calibrating its response to COVID-19</a>, the limits of our existing crisis strategies are plain to see. </p>
<p>Political leaders are stuck between controlling the spread of the pandemic and resuming commercial and economic activity. How quickly should restrictions on confinement and social distancing be relaxed? And for whom? Their responses rely largely on the extensive use of personal protective equipment (notably masks), deployment of immunity tests and test-and-tracing technologies.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/1q12B1P79iM?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Prime Minister Justin Trudeau on data collection and analysis to inform pandemic response policies.</span></figcaption>
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<p>There are two problems with this approach: first, they are based on after-the-fact views of COVID-19’s spread. And second, this approach treats the pandemic as a medical problem.</p>
<h2>Managing the unknowns</h2>
<p>The facts of this virus are becoming clear. While it is hard to know who is infected given that many may be asymptomatic, we do know that <a href="https://slma.lk/wp-content/uploads/2020/02/TheEpidemiologicalCharacteristicsofanOutbreakof2019NovelCoronavirusDiseases28COVID-1929E28094China2C20201.pdf">the vast majority of those who become infected will not experience severe symptoms</a>. Data from France show that if everyone gets infected, <a href="http://doi.org/10.1126/science.abc3517">only approximately one per cent of the population will experience symptoms severe enough to require admission to an intensive care unit</a>.</p>
<p>Instead of using the blunt instrument approach of designing public health policy for an entire population, would it make more sense to predict who would fall into that highly vulnerable one per cent group and then devote the state’s resources to protecting them. That way, those who are less vulnerable can continue about their lives, while those who are more vulnerable would be better protected.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/when-will-we-return-to-normal-after-coronavirus-the-data-will-tell-us-136478">When will we return to normal after coronavirus? The data will tell us</a>
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<h2>Different perspectives</h2>
<p>Governments are not following this path. They see COVID-19 as primarily a medical problem when it is really an information problem. If it were to be seen as an information problem, then potential solutions are possible. These solutions use advanced information technologies that have proven successful in other contexts.</p>
<p>Consider personalized prediction. Machine-learning models fed with vast quantities of health data, for example, could be trained to make clinical risk predictions. Public health leaders could use these prediction models to identify those who are vulnerable and who would need to be quarantined and prioritized for access to scarce medical resources, such as personal protective equipment, dedicated health support, free delivery of groceries and other necessities.</p>
<p>Personalized prediction, based on machine learning and artificial intelligence, has transformed businesses over the last 20 years. Netflix evaluates consumers’ characteristics and past choices to make <a href="https://research.netflix.com/research-area/recommendations">personalized recommendations about what they might watch next</a>. Amazon uses the same approach to <a href="https://www.amazon.com/gp/help/customer/display.html?nodeId=GE4KRSZ4KAZZB4BV">recommend future purchases based on past spending behaviour</a>. </p>
<p>A similar approach could be taken to measure individuals’ clinical risk of suffering severe outcomes if infected during a pandemic such as COVID-19. What would this look like if rolled out on a country-wide scale? </p>
<p>Each person would receive an electronic message with their clinical risk score, which would be derived automatically from their medical records and <a href="https://www.covidanalytics.io/mortality_calculator">reflect how vulnerable they are to a particular virus</a>. Those with predicted scores above a certain threshold would be classified as “severe” or “high risk.” They would be temporarily isolated and supported. Those with scores below a threshold would be able to return to a more-or-less normal life.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Two office workers wearing surgical masks using laptop." src="https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/351611/original/file-20200806-24-xv5v9n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Identifying and protecting the more vulnerable members of a population would enable the development of herd immunity, and a quicker return to work.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Data-informed policies</h2>
<p>A personalized approach to clinical risk during a pandemic outbreak has multiple benefits. It could protect medical systems from being overwhelmed and communities from the economic pain of indiscriminate lock-downs. It could help build herd immunity with lower mortality — and fast. It could also allow a more targeted and fairer allocation of resources, from test kits to hospital beds. Unlike medical tests that are scarce, expensive and slow to deploy, a data-driven digital personalization approach could be applied quickly and is relatively easy to scale.</p>
<p>An approach based on data science and machine learning could also enable safer de-confinement at a much faster rate than current best practices. In one study, my co-authors and I <a href="https://dx.doi.org/10.2139/ssrn.3588401">used COVID-19 data from France as of early May 2020 to understand the public health policies regarding the enacting and lifting of restrictions intended to control the spread of disease</a>.</p>
<p>Our simulations show that isolation entry and exit policies could be substantially faster and safer using personalized prediction models. Our simulations indicated that the complete lifting of COVID-19 restrictions could be undertaken in six months, with only 30 per cent of the population being under strict isolation for longer than three months — all without overwhelming the medical system. In contrast, using conventional methods, simulations indicated that the complete exit would take 17 months, and 40 per cent of the population would be subject to strict isolation for more than one year.</p>
<p>This ideal scenario may seem like a moonshot, but a simple version could be designed and rolled out fairly quickly. Governments can focus on the data and models that can be deployed for COVID-19. For example, age, body mass index and hypertension and diabetes data for each person — all of which can be assessed at a community pharmacy for everyone within weeks and applied to an individual’s health card — can be used to train models. Even with just this information, public policy can be much more targeted.</p>
<h2>National data infrastructure</h2>
<p>What would need to happen to implement this new model on a province- or country-wide basis? For one thing, a deep data pool. Training a machine learning model for a pandemic such as COVID-19 would require data on thousands of people who tested positive and were hospitalized for the virus. It would also require medical data for everyone else in the population, akin to the information dossiers that big tech firms such as Facebook or Netflix have on consumers.</p>
<p>This is why government commitment to building a robust health data infrastructure is so important. Unfortunately, in Canada as elsewhere, the state of <a href="https://www.ehealthontario.on.ca/en/ehrs-explained">electronic health records</a> varies widely. Depending on the jurisdiction, records may be incomplete or difficult to access, and information may not be standardized. A commitment to address these shortcomings is paramount. Privacy protections and cybersecurity provisions would need to be developed and well communicated.</p>
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<em>
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Read more:
<a href="https://theconversation.com/your-electronic-health-data-understanding-the-different-records-systems-and-how-they-connect-124692">Your electronic health data: Understanding the different records, systems and how they connect</a>
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</em>
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<p>As COVID-19 shows, the upside of applying advanced analytical tools used successfully elsewhere vastly outweighs the downside of staying the course. The question is not whether countries can apply artificial intelligence at a health-system scale. It is already being used at scale for commercial purposes that hardly involve life-or-death issues. The question for policy makers is: Can we afford not to go down this path?</p><img src="https://counter.theconversation.com/content/140407/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anton Ovchinnikov does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A national health plan that uses data to assess individual risk and control disease outbreaks would have created less disruption than the current coronavirus pandemic response.Anton Ovchinnikov, Distinguished Professor of Management Analytics at Smith School of Business, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1437962020-08-05T12:29:35Z2020-08-05T12:29:35ZVideo: What the huge COVID-19 testing undercount in the US means<figure><img src="https://images.theconversation.com/files/350929/original/file-20200803-24-10iyzkf.jpg?ixlib=rb-1.1.0&rect=0%2C13%2C2995%2C1688&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Health care workers use a nasal swab to test a person for COVID-19 in Pembroke Park, Florida.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/health-care-workers-use-a-nasal-swab-to-test-a-person-for-news-photo/1257627252?adppopup=true">Joe Raedle/Getty Images News via Getty Images</a></span></figcaption></figure><p><em>Researchers from the Centers for Disease Control and Prevention and other institutions recently published <a href="http://doi.org/10.1001/jamainternmed.2020.4130">a study</a> which estimated that the true number of people infected by COVID-19 could be six to 24 times higher than the number of confirmed cases. Melissa Hawkins, professor of public health at American University, explains what this large undercount means and why insufficient data is hampering the U.S.’s ability to control the pandemic.</em></p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/ggSMZrZ4NUg?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Melissa Hawkins explains the implications of the COVID-19 testing undercount.</span></figcaption>
</figure>
<h2>What are some reasons for the large disparity between the true number of infected cases and the confirmed case count in the U.S.?</h2>
<p>We just passed <a href="https://www.cdc.gov/coronavirus/2019-ncov/cases-updates/cases-in-us.html">4 million total confirmed cases</a> and over 150,000 deaths. But those confirmed cases really only tell part of the story since we know the cases and deaths are undercounted due to lack of testing. Particularly at the beginning of the pandemic, only those with significant illness were tested and there were <a href="https://www.nytimes.com/2020/04/25/us/politics/virus-testing-shortages-states-trump.html">shortages and problems with the test</a>.</p>
<p>We also know that there is a significant amount of <a href="https://www.cnbc.com/2020/07/17/top-hhs-official-says-most-of-the-coronavirus-transmission-is-from-asymptomatic-people.html">asymptomatic spread</a> that isn’t captured in those testing numbers, particularly in places that still lack access to widespread testing. Many researchers are attempting to model and estimate the true number of total cases and deaths. The CDC study that you’re citing – those estimates of a true infection rate range from eight to 10 times higher than the number of cases that are confirmed. </p>
<h2>Were you surprised by the results of the study?</h2>
<p>Testing is the foundation of a modern public health approach to controlling this virus. We have lots of tools in our tool kit, but at the very foundation is widespread testing. So is this surprise? No, because the U.S. has had problems with our testing from the very, very beginning and now we’re playing catch up. </p>
<p>We continue to play catch up to try to get an accurate understanding of where we are. Then <a href="https://theconversation.com/how-coronavirus-contact-tracing-works-in-a-state-dr-fauci-praised-as-a-model-to-follow-138757">contact tracing</a> can help to limit the spread. But we can do better, and we need to do better with our testing capacity. </p>
<h2>Is it good news that even though so many people have been infected, they’re not filling up hospital beds?</h2>
<p>It remains that many cases are mild and are not severe enough to be hospitalized or cause severe illness.</p>
<p>And of course, that’s a good thing. The flip side of that is the ongoing spread. So when there are mild or asymptomatic cases and people don’t know that they’re sick, then that’s contributing to spread. If not identified, that keeps us in this situation even longer where we’re not containing the spread. </p>
<h2>Does the high number of infected cases mean that we are close to reaching herd immunity?</h2>
<p>Achieving herd immunity varies by disease. From what we know about SARS, which is close to the virus that causes COVID-19, it’s estimated that 60-70% of the population would need to be infected and have antibodies in order to reach herd immunity. That’s based on the basic <a href="https://theconversation.com/r0-how-scientists-quantify-the-intensity-of-an-outbreak-like-coronavirus-and-predict-the-pandemics-spread-130777">R0 reproductive number</a>, which indicates the average number of new people to whom a single infected person can spread the virus. </p>
<p>For context, the reproductive number of the flu is about 1.3 and SARS-CoV-2 is <a href="https://abcnews.go.com/Health/r0-covid-19-virus-key-metric-opening-plans/story?id=70868997">between 2 and 3</a>, meaning it’s a highly contagious disease. So even at the higher end of the estimates that we expect the true number of cases to be, the majority of the country remains susceptible to the virus. Less than 5% of the U.S. population has been infected. </p>
<figure class="align-center ">
<img alt="An aerial image of a long line of cars waiting for a COVID-19 test at Dodger stadium in Los Angeles" src="https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350959/original/file-20200803-18-gilqa3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Hundreds line up for COVID-19 testing in the parking lot at Dodger Stadium in Los Angeles on July 8.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/hundreds-line-up-for-covid-19-testing-in-the-parking-lot-at-news-photo/1227119037?adppopup=true">Brian van der Brug/LA Times via Getty Images</a></span>
</figcaption>
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<p>So what does it take in order to reach herd immunity? It’s going to take a vaccine. </p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>If a vaccine candidate passes the safety and efficacy trials and is considered a success, this would mean that people can have access to a vaccine that will be able to create immunity and prevent spread of the virus. Now, it’s also likely, as we’re learning about immunity and length of immunity, that a vaccine may need to be administered annually, similar to the way that the flu vaccine is an annual vaccine. But this still remains to be seen.</p>
<h2>What can the U.S. do to reduce the disparity between the true number of infections and the confirmed case count?</h2>
<p>The things that we know – universal mask wearing, frequent hand-washing and maintaining physical distancing. These things work. These are public health prevention tools that work. </p>
<p>Beyond individual behavior and ways we can protect ourselves, protect our community, and our loved ones is action at the state and federal level. There needs to be increased, accurate and rapid testing without a long lag time for results so people get results before there may be additional unintentional spread.</p><img src="https://counter.theconversation.com/content/143796/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Melissa Hawkins receives funding from the United States Department of Agriculture (USDA).</span></em></p>A recent report by the CDC estimated that the true number of COVID-19 cases in the US could be six to 24 times more than the number of confirmed cases. A public health scholar explains the implications.Melissa Hawkins, Professor of Public Health, Director of Public Health Scholars Program, American UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1413542020-07-12T11:25:30Z2020-07-12T11:25:30ZHow some OECD countries helped control COVID-19 in long-term care homes<figure><img src="https://images.theconversation.com/files/345907/original/file-20200706-29-1ck1n83.JPG?ixlib=rb-1.1.0&rect=29%2C22%2C4861%2C3253&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Flowers sit on a bench in front of Orchard Villa care home in Pickering, Ont. on April 27, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn</span></span></figcaption></figure><p>People living in long-term care facilities and seniors’ residences have had their lives disproportionately affected by <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/prevent-control-covid-19-long-term-care-homes.html#a5">measures taken to stem the spread of COVID-19</a>. In addition to things like social distancing and hand-washing, policies in Canada and other countries have included quarantining in individual rooms, and limited or no access to family members, who are often caregivers as well. </p>
<p>The <a href="https://www.cihi.ca/en">Canadian Institute for Health Information</a> (CIHI) is dedicated to collecting and providing health data on our health systems, and supporting comparable analysis of their performance. After the first three months of the COVID-19 experience, we have reviewed <a href="https://www.cihi.ca/sites/default/files/document/covid-19-rapid-response-long-term-care-snapshot-en.pdf">how different countries managed COVID-19 in long-term care settings</a>.</p>
<p>Restrictive measures were a response to a terrible threat to public health. It is important to recall that in the early spring modelling, the COVID-19 epidemic in <a href="https://doi.org/10.1503/cmaj.200476">Canada was tracking the same path as in Italy</a>. All levels of <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/canadas-reponse.html">government in Canada have taken extraordinary measures</a> to avoid the experience of overwhelming our hospital systems with COVID-19 patients. </p>
<h2>Impact of COVID-19 in long-term care</h2>
<p>While Canada has been largely successful in managing the impact on hospitals, the same cannot be said about long-term care facilities; <a href="https://www.cihi.ca/en/new-analysis-paints-international-picture-of-covid-19s-long-term-care-impacts">more than 80 per cent of COVID-19 deaths in Canada have been in long-term care</a>.</p>
<p>On June 25, CIHI released an international analysis that shows how Canada compares to 16 other Organization for Economic Co-operation and Development (OECD) countries in its COVID-19 response in long-term care. The analysis focuses on three areas of comparison: cases and deaths, baseline health system characteristics and policy response. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=418&fit=crop&dpr=1 600w, https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=418&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=418&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=525&fit=crop&dpr=1 754w, https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=525&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/345908/original/file-20200706-4013-6tql7g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=525&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A home-care worker is shown outside Orchard Villa long-term care home in Pickering, Ont., on May 26, 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn</span></span>
</figcaption>
</figure>
<p>At the time our report was finalized, the number of reported COVID-19 deaths among long-term care residents varied substantially around the world, from 28 in Australia to 30,000 in the United States, and more than 10,000 in each of France, Italy, Spain and the United Kingdom.</p>
<h2>Canada and the OECD</h2>
<p>While Canada’s overall COVID-19 death rate is relatively low compared to other OECD countries (176 deaths per million in Canada versus the OECD average of 266 deaths per million), it has among the highest proportion of deaths occurring in long-term care. More than 5,000 long-term care residents have died. In other words, our long-term care homes are driving COVID-19-related deaths in Canada. </p>
<p>While the numbers and statistics from this report are difficult to read, there are lessons we can take from it. Canada can benefit from a comparative look at other countries. Australia, Austria, Netherlands, Hungary and Slovenia implemented mandatory prevention measures in long-term care homes at the same time as their stay-at-home orders and public closures, and had fewer COVID-19 infections and deaths in long-term care. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=296&fit=crop&dpr=1 600w, https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=296&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=296&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=371&fit=crop&dpr=1 754w, https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=371&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/346386/original/file-20200708-31-u401y3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=371&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">COVID-19 deaths as of May 25, 2020 at 9 p.m.: number per million population (total and long-term care)</span>
<span class="attribution"><span class="source">(CIHI)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Many control measures had an impact. These included broad COVID-19 testing and tracing in homes, isolation wards to manage clusters, additional supports for workers such as surge staffing, specialized teams and personal protective equipment. </p>
<p>The report also showed that countries with centralized regulation and organization of long-term care facilities generally had lower COVID-19 cases and deaths. However, more information is needed in Canada to evaluate how organizational models, among other factors, affect outcomes.</p>
<h2>Local measures</h2>
<p>We can also look at additional local measures within Canada that have been shown to be effective.</p>
<p>For example, <a href="https://www.cbc.ca/news/canada/ottawa/long-term-care-second-wave-1.5624813">in Kingston, Ont.</a>, a combination of early inspections of home infection control practices, the availability of health practitioners to follow up on questions about practices, as well as a strong partnership between long-term care, public health and the local hospital has resulted in no long-term care infections in and around the Kingston area to date.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/345909/original/file-20200706-3947-143dca2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Warning signs and information about COVID-19 along with a hand sanitizing station is shown inside the doors of the Hillsdale Terraces long-term care home in Oshawa, Ont., on April 5, 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Doug Ives</span></span>
</figcaption>
</figure>
<p>Meanwhile, <a href="https://www.cbc.ca/news/politics/long-term-care-crisis-covid19-pandemic-1.5589097">British Columbia has so far been successful</a> in controlling the spread of facility outbreaks by making all long-term care staff public employees for six months, <a href="https://www.timescolonist.com/news/local/long-term-care-workers-limited-to-one-facility-only-under-new-rules-1.24116171">providing workers with comparative pay, full-time work and sick leave benefits</a>. This allowed staff to take time off work if they were exposed to COVID-19, dedicate their time to simply one facility, as well as streamline public health information.</p>
<p>Understanding the supply of personal protective equipment, the number of beds and how they are configured in homes would have helped with development of plans for isolating residents who became infected. Data on staffing levels, including how many work in multiple homes would have helped to identify gaps across the country. Having earlier and more comprehensive testing of long-term care staff and residents would have improved data about infection rates in residents and staff, which are both key to identifying and containing outbreaks. </p>
<h2>The importance of data</h2>
<p>In Canada, we do have rich clinical data for long-term care residents. This allows homes to plan their care, assess how it’s working and monitor risk (such as risk of pressure ulcers or falls). This same data supports and underpins publicly reported quality measures, including falls, worsened depression or worsened pain. Expanding long-term care data to include all provinces would enable complete reporting of quality of care measures. Reporting on a standardized set of pan-Canadian indicators can help improve quality of care for all people living in long-term care.</p>
<p>Ultimately, we know good data leads to good decisions. With the data we have, and the opportunity to start collecting and using more information, better decisions are possible. Thousands of people across the country — from all walks of life — have made significant sacrifices to protect others. When we ask them to do so again, we owe them the best possible explanation of why it’s necessary. </p>
<p>The more we know, the better we can do.</p><img src="https://counter.theconversation.com/content/141354/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David O'Toole is the President and CEO of the Canadian Institute for Health Information. He is also Chair of the Board of Kingston Health Sciences Centre and is an adjunct professor in the School of Policy Studies at Queen's University. </span></em></p>People living in long-term care facilities have been disproportionately affected by COVID-19 in Canada. A new report analyzing long-term care around the world assesses Canada’s pandemic performance.David O'Toole, President, CEO Canadian Institute for Heath Information (CIHI), Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1414922020-07-01T09:45:39Z2020-07-01T09:45:39ZCoronavirus deaths and swelling public sector debt share a data-quality problem<figure><img src="https://images.theconversation.com/files/344761/original/file-20200630-103649-dc5an.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Different countries report coronavirus data differently.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/epidemiologist-doctor-working-on-laptop-computeranalyzing-1702100308">Shutterstock.com</a></span></figcaption></figure><p>Watching scientists, politicians and journalists struggle to compare national death rates from the coronavirus pandemic, I had an acute case of déjà vu. Though the virus may be novel, the confusion generated by inconsistent data standards is anything but. It’s something I’ve observed closely for many years in studying public sector debt.</p>
<p>Such league table comparisons in both cases are simply not reliable. The pandemic has shown that public health data and economic data share the same flaws and challenges regarding basic accounting issues. Chief among these is how different countries measure data and how to harmonise data that comes from lots of different sources.</p>
<p>Take harmonisation. The UK is widely reported to have the highest number of <a href="https://www.ecdc.europa.eu/en/cases-2019-ncov-eueea">coronavirus deaths in Europe</a>. But what is considered to be a COVID-19 death is, in fact, not commonly defined. Spain and Germany count all deaths where the person had tested positive for COVID-19. As testing capacities were limited at the beginning of the pandemic, this limited the number of COVID-19 deaths actually reported. France (like the UK) first counted only hospital deaths, before adding deaths in elderly homes. Belgium includes untested but suspected persons in its numbers.</p>
<p>Such lack of harmonisation is hardly confined to Europe. In the US, methods <a href="https://theconversation.com/failure-to-count-covid-19-nursing-home-deaths-could-dramatically-skew-us-numbers-137212">vary from one state to another</a>, with lots of states initially not including retirement homes in their reporting. This lack of harmonised data makes it very difficult to compare what’s going on and to accurately study the spread of the disease.</p>
<p>We see the same pattern in public sector debt measurements. The most commonly used numbers from the International Monetary Fund (IMF) or from the Organisation for Economic Cooperation and Development (OECD) – two of the world’s biggest producers of global economic data – are <a href="https://www.youtube.com/watch?v=qFf3mmSAU9w">not reliably comparable</a>.</p>
<p>Yet politicians compare them all the time. And this mixing of apples and oranges will surely grow even more complicated and unreliable as countries around the world massively increase their debt levels by spending to prop up economies decimated by the pandemic. </p>
<p>The IMF <a href="https://www.imf.org/en/News/Articles/2020/04/15/tr041520-transcript-of-the-april-2020-fiscal-monitor-press-briefing">has said governments should</a> “do whatever it takes but keep the receipts” – noting that public funds in response to emergency situations can be subject to corruption. But such receipts, though perhaps thwarting temptation for ill-gotten gains, won’t provide valid comparisons of the impact of public policies on public deficit and debt.</p>
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<h2>Building a global data quality index</h2>
<p>Once the pandemic gives way to some degree of normality, this would be an opportune time to assess what kind of reporting system is best suited to a pandemic – and seek to reach agreement in order for this data to be harmonised. A good place to start is with the deaths in care homes. </p>
<p>In many countries, deaths in care homes took a while to be accounted for as their information systems are currently not well integrated with the ones from hospitals. This is very significant considering deaths in care homes represent about <a href="https://www.theguardian.com/world/2020/apr/13/half-of-coronavirus-deaths-happen-in-care-homes-data-from-eu-suggests">one-half of the total COVID-19 deaths in European countries</a>. These are also numbers that are politically toxic and <a href="https://thehill.com/opinion/healthcare/499535-manipulation-of-pandemic-numbers-for-politics-risks-lives">prone</a> to <a href="https://www.bloomberg.com/news/articles/2020-05-13/experts-question-russian-data-on-covid-19-death-toll">manipulation</a>.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/344765/original/file-20200630-103683-vo9gvp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Care home deaths are integral to the coronavirus data problem.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/paris-france-april-24-2020-nurses-1713187714">Tommy Larey / Shutterstock.com</a></span>
</figcaption>
</figure>
<p>More broadly, the crisis has convinced me that for economic indicators as well as health statistics there’s an urgent need for a global data quality index and I’m currently exploring ways to build one. The index would compare the data quality of different countries on all major variables, as the current assessment tools are very limited in terms of specificity.</p>
<p>Such a data quality index would allow voters, investors and other stakeholders to benchmark like-for-like numbers. They could then better hold their governments to account. </p>
<p>For public health issues, such an index would boost reliability and transparency on vital issues such as how the virus spreads, who it affects the most, and the impact of national or regional factors, including temperature, humidity and population density. This information could further inform international bodies such as the World Health Organisation about which countries need help the most.</p>
<p>It is only with comparable data that scientists can assess whether the measures they implement are effective in protecting citizens, and better prepare for future health crises.</p>
<p>Likewise, a data quality index for debt and other economic indicators would help investors decide where to direct their money and to better assess a country’s risk profile. It would help international organisations better monitor situations in order to determine which countries to support and which to sanction, and help researchers perform more robust analysis. All of this would in turn help citizens assess their country’s economy in order to vote based on facts rather than political spin.</p><img src="https://counter.theconversation.com/content/141492/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marion Boisseau-Sierra does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>It is only with comparable data that scientists can assess whether the measures they implement are effective in protecting citizens, and better prepare for future health crises.Marion Boisseau-Sierra, University Lecturer in Accounting, Cambridge Judge Business SchoolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1410522020-06-23T03:42:35Z2020-06-23T03:42:35ZEvery step you take: why Google’s plan to buy Fitbit has the ACCC’s pulse racing<figure><img src="https://images.theconversation.com/files/343130/original/file-20200622-75522-5r1j5p.jpg?ixlib=rb-1.1.0&rect=89%2C107%2C5901%2C3880&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/bangkok-thailand-october-06-2018-view-1381312625">Shutterstock</a></span></figcaption></figure><p>The Australian Competition and Consumer Commission (ACCC) has <a href="https://www.accc.gov.au/media-release/google%E2%80%99s-purchase-of-fitbit-raises-preliminary-competition-concerns">expressed concern</a> about Google’s <a href="https://investor.fitbit.com/press/press-releases/press-release-details/2019/Fitbit-to-Be-Acquired-by-Google/default.aspx">proposed acquisition</a> of fitness tracker company Fitbit. </p>
<p>The acquisition will let Google add years’ worth of Fitbit users’ data to its already unequalled consumer data collection. This could reduce competition in certain health services and other markets in Australia.</p>
<p>Google revealed its plans to acquire Fitbit Inc. for US$2.1 billion last November. But the deal will only go ahead if it gets clearance from competition regulators around the world. </p>
<p>While the ACCC is the first regulator globally to announce its concerns, the <a href="https://www.usnews.com/news/technology/articles/2020-06-16/eu-antitrust-regulators-set-july-20-deadline-for-google-fitbit-deal">European Commission</a> and <a href="https://nypost.com/2020/04/03/feds-ramp-up-probe-of-2-1b-google-fitbit-deal-amid-privacy-worries/">US Department of Justice</a> are also evaluating the deal. Both will likely take an interest in the ACCC’s views, for which <a href="https://www.accc.gov.au/public-registers/mergers-registers/public-informal-merger-reviews/google-llc-proposed-acquisition-of-fitbit-inc">submissions are being accepted</a>.</p>
<h2>Collective concern is called for</h2>
<p>With more than <a href="https://investor.fitbit.com/press/press-releases/press-release-details/2019/Fitbit-to-Be-Acquired-by-Google/default.aspx">28 million people</a> using Fitbit wearable devices, many have <a href="https://www.theguardian.com/technology/2019/nov/05/fitbit-google-acquisition-health-data">raised concerns</a> about Google adding Fitbit’s sensitive data to its <a href="https://www.wired.com/story/google-tracks-you-privacy/">already extensive tracking</a> of consumers. </p>
<p>Google has left many <a href="https://www.wired.co.uk/article/google-buying-fitbit-health-data-privacy">questions unanswered</a> about how it would use the data. Consumers have reason to be sceptical about Google’s <a href="https://blog.google/products/hardware/agreement-with-fitbit">privacy promises</a>, and the competitive effects of the merger. </p>
<h2>Sharing your intimate details</h2>
<p><a href="https://www.fitbit.com/legal/privacy-policy#info-we-collect">Fitbit collects</a> highly personal information, including sleep patterns, heart rate, active minutes, height and weight, date of birth, food logs, mobile number, biography and precise location data. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/343364/original/file-20200623-188911-1pn8l2g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">According to estimates by Forbes, Fitbit co-founders James Park and Eric Friedman will each receive as much as US$150 million (before taxes) as a result of selling their shares in Fitbit.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/techcrunch/48843669166/in/photolist-2hq9za1-2hq9zds-2hq9z2R-2hq7Fg5-2hqatFu-2hqatD5-2hq7DuV-gK72e8-gK85aV-v4bND4-onq9rn-K5d9iM-yF6L5x-yF2fNJ-HckB8b-K2cXLo-y1zRxj-yYpUqp-yWBmV9-yF2h3Y-MQCAUc-o4aupd-w1yGoX-oksFeJ-o4aGe3-yXChSp-yF2gwC-yXChcg-o4auZ1-o4aME4-yYpTJz-oiCtsm-oiCsUs-JXiS9P-o4aaab-okC9V5-JXj216-okCuEq-y1Jqi2-okEevr-oknxmr-o4arwE-okE3Hz-K5d7Nn-okEiRR-okEhDF-onqgXp-o4bAMZ-onqayT-okC7rY">TechCrunch/Flickr</a></span>
</figcaption>
</figure>
<p>For those using Fitbit’s live coaching services, it also collects wellness plans and goals, calendar events, and communications with a coach. If you’re a woman using “female health tracking”, data can also include your periods, fertile times, ovulation days and health symptoms. </p>
<p>The ACCC regards Fitbit data as having “<a href="https://www.accc.gov.au/system/files/public-registers/documents/Google%20Fitbit%20-%20Statement%20of%20Issues%20-%2018%20June%202020.pdf">unique attributes</a>”, noting that datasets from other wearable devices are “not as voluminous, reliable or broad”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-accc-is-suing-google-over-tracking-users-heres-why-it-matters-126020">The ACCC is suing Google over tracking users. Here's why it matters</a>
</strong>
</em>
</p>
<hr>
<h2>Google’s privacy reassurances are not binding</h2>
<p>Last November, Google and Fitbit were quick to <a href="https://investor.fitbit.com/press/press-releases/press-release-details/2019/Fitbit-to-Be-Acquired-by-Google/default.aspx">reassure consumers</a> that “Fitbit health and wellness data will not be used for Google ads”. A Google spokesperson told The Conversation: </p>
<blockquote>
<p>Similar to our other products, with wearables, we will be transparent about the data we collect and why. And we do not sell personal information to anyone.</p>
</blockquote>
<p>However, the ACCC points out <a href="https://www.accc.gov.au/system/files/public-registers/documents/Google%20Fitbit%20-%20Statement%20of%20Issues%20-%2018%20June%202020.pdf">Google is not bound</a> by its commitment to not use the data in its advertising businesses. As the competition watchdog’s <a href="https://www.accc.gov.au/media-release/digital-takeovers-transactions-may-harm-consumers">Chair Rod Sims</a> said:</p>
<blockquote>
<p>It is a stretch to believe any commitment Google makes in relation to Fitbit users’ data will still be in place five years from now.</p>
</blockquote>
<p>When Google acquired online advertising business DoubleClick, it reassured users it <a href="https://slate.com/technology/2016/10/google-changed-a-major-privacy-policy-and-no-one-really-noticed.html">would only combine personal data</a> from the two businesses if users opted into this combination. Eight years later, <a href="https://www.accc.gov.au/system/files/Digital%20platforms%20inquiry%20-%20final%20report.pdf">Google simply deleted this promise</a> from its privacy policy. </p>
<p>It’s also worth noting Google has not promised to refrain from using Fitbit data in its <em>non-advertising</em> businesses. This could include <a href="https://www.ft.com/content/50e1f042-06f3-11ea-a984-fbbacad9e7dd">health services</a> or, in future, <a href="https://www.ft.com/content/b7b3b08a-d4a3-11e9-8d46-8def889b4137">health or life insurance</a>. Google would not need to “sell” your data to use it for these commercial purposes.</p>
<h2>Google’s huge data advantage</h2>
<p>Google already has the most extensive collection of consumer data on the planet. This includes data from Google search, YouTube, Gmail, Google Maps, Google Nest, Android and Google devices – as well as consumer data collected from millions of third-party websites using Google’s services such as Google Analytics, Google Ads and reCAPTCHA. </p>
<p>The ACCC acknowledges Google already uses its pervasive data collection to create <a href="https://www.accc.gov.au/system/files/public-registers/documents/Google%20Fitbit%20-%20Statement%20of%20Issues%20-%2018%20June%202020.pdf">unique profiles of individual users</a>. It points out acquiring Fitbit would give Google “one of the largest and most detailed existing fitness and health datasets, as well as another avenue through which it can continue to gather consumer data”. </p>
<p>The ACCC is particularly concerned the proposed acquisition could substantially reduce competition between Fitbit, Google and others in “data-dependent health services” such as those supplying: </p>
<ul>
<li>tailored digital advice based on individual health signals to users of Fitbit and other wearables on how to improve their health or manage a medical condition</li>
<li>insights to insurance companies or employers wishing to compile risk profiles, reduce costs or enhance productivity </li>
<li>diagnostic tools for medical institutions and doctors to determine early indicators of chronic disease and</li>
<li>insights or raw data for health researchers. </li>
</ul>
<p>If Google acquires Fitbit’s user data, it could gain a significant advantage over other suppliers of these services and prevent them from accessing the dataset. </p>
<p>According to the ACCC, it could also have an incentive hinder rivals such as Apple, Samsung and Garmin, by removing their access to Google Maps, Google Play Store and Wear OS (a Google operating system for wearables).</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/amazon-facebook-and-google-dont-need-to-spy-on-your-conversations-to-know-what-youre-talking-about-108792">Amazon, Facebook and Google don't need to spy on your conversations to know what you're talking about</a>
</strong>
</em>
</p>
<hr>
<h2>Entrenching Google’s power in digital advertising</h2>
<p>Google makes most of its annual revenue (more than US$100 billion) from online advertising services. Privacy advocates have <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3587239">criticised the ad tech industry</a>, including dominant players like Google and Facebook, for creating a “<a href="https://medium.com/clearcode/taming-the-wild-west-of-consumer-data-sharing-in-adtech-b3cab26adbe8">data free for all</a>” where consumers’ intimate information is exchanged between hundreds of companies engaged in targeted advertising.</p>
<p>The ACCC says it is concerned that by acquiring Fitbit’s datasets, Google could entrench its market power in certain ad tech markets. For example, it could “even more effectively target advertising to consumers with health-related issues”. </p>
<h2>What can the ACCC actually do about it?</h2>
<p>The ACCC plans to announce its final stance by mid-August on whether Google’s merger with Fitbit would contravene Australia’s competition legislation. If it decides the merger is likely to substantially lessen competition, it could seek orders from the Federal Court to prevent the merger.</p>
<p>But practically speaking, regulators will likely try to coordinate their response internationally, with the overall outcome decided in larger markets such as the United States and European Union. </p>
<p>The <a href="https://www.usnews.com/news/technology/articles/2020-06-16/eu-antitrust-regulators-set-july-20-deadline-for-google-fitbit-deal">European Commission</a> is expected to release its ruling in July. And past <a href="https://www.rferl.org/a/1096891.html">events indicate</a> the commission could impose conditions, or prevent the merger going ahead internationally – even if the US Department of Justice gives it the green light.</p><img src="https://counter.theconversation.com/content/141052/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katharine Kemp receives funding from The Allens Hub for Technology, Law and Innovation. She is a Member of the Advisory Board of the Future of Finance Initiative in India, the Centre for Law, Markets & Regulation and the Australian Privacy Foundation.</span></em></p>The watchdog has voiced concerns over the proposed US$2.1 billion merger, from which both users and Australian health services could lose out.Katharine Kemp, Senior Lecturer, Faculty of Law, UNSW, and Academic Lead, UNSW Grand Challenge on Trust, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.