tag:theconversation.com,2011:/au/topics/patient-rights-14279/articlesPatient rights – The Conversation2022-08-15T14:57:14Ztag:theconversation.com,2011:article/1873932022-08-15T14:57:14Z2022-08-15T14:57:14ZLegal claims for medical mistakes are on the rise in South Africa: what’s behind the trend<figure><img src="https://images.theconversation.com/files/478507/original/file-20220810-13-is5je2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Quality of care thresholds at health facilities in South Africa are on the rise</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Medico-legal claims – claims based on medical negligence or malpractice – have skyrocketed in South Africa. Recent figures indicate a <a href="https://www.sanews.gov.za/south-africa/plans-curb-medico-legal-claims#:%7E:text=The%20National%20Treasury%20has%20unveiled,said%20claims%20had%20increased%20rapidly">growth rate of 23%</a> for medico-legal claims in the public sector since 2014. In the past financial year, more than <a href="https://www.spotlightnsp.co.za/2022/02/01/analysis-is-there-a-way-out-of-sas-medico-legal-morass/">R6.5 billion</a> (over US$390 million) was awarded in medico-legal claims. </p>
<p>This is not just a South African issue but a global and regional one. In <a href="https://allafrica.com/stories/202109170506.html#:%7E:text=There%20are%20increasing%20reports%20of,lost%20to%20payment%20of%20damages">Ghana</a> and <a href="https://times.mw/crackdown-on-doctors/">Malawi</a> litigation for medico-legal issues has also become more prevalent. </p>
<p>The number of claims as well as their value have increased. One possible reason could be that medical and technological advances are increasing life expectancy. These advances are good in general. But they may inflate the size of claims as factors such as future maintenance, loss of income and future healthcare are considered when calculating damages.</p>
<p>The cause of the sharp increase in claims – and how to address it – has been investigated and debated by various scholars and authorities in South Africa. This is important because money spent on these claims from the health budget is money not being spent on essential healthcare priorities. </p>
<h2>What’s driving the rise in claims</h2>
<p><a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2693960">Scholars</a> and the <a href="https://www.justice.gov.za/salrc/dpapers/dp154-prj141-Medico-Legal-Claims.pdf">South African Law Reform Commission</a> have identified a variety of factors driving the rise in medico-legal claims.</p>
<p>The first and most obvious cause relates to the quality of healthcare services and clinical errors. Cerebral palsy-type claims make up <a href="https://www.justice.gov.za/salrc/dpapers/dp154-prj141-Medico-Legal-Claims.pdf#page=197">around half</a> of medico-legal claims in South Africa. <a href="https://www.cdc.gov/ncbddd/cp/facts.html">Cerebral palsy</a> refers to a group of disabilities caused by damage to the brain. It’s widely <a href="https://www.justice.gov.za/salrc/dpapers/dp154-prj141-Medico-Legal-Claims.pdf#page=197">assumed</a> that where there is poor healthcare provision, there are high numbers of cerebral palsy cases. While poor quality of care during labour is indeed one risk, there are multiple other potential causes of cerebral palsy. </p>
<p>Other medico-legal claims include negligence in <a href="https://www.saflii.org/za/cases/ZASCA/2016/176.html">applying proper care</a>, failure to take reasonable steps to <a href="https://www.saflii.org/za/cases/ZASCA/2016/166.html">prevent stillbirth</a>, <a href="http://www.saflii.org/za/cases/ZAWCHC/2016/74.html">misdiagnosis</a> and delayed treatment. </p>
<p>But issues in the healthcare system go beyond individual negligence. Healthcare practitioners are expected to perform their duties according to the degree of care and skill reasonably expected of them. This may not always be possible due to environmental factors. For example, equipment may be old and deficient, or facilities may be understaffed.</p>
<p>The quality of care is affected by a number of factors. Maladministration and mismanagement have the biggest impact. The availability of resources in already strained national and provincial health budgets also affects care.</p>
<p>The legal profession, too, has been identified as contributing to the rise in claims. Arguments have been made that malpractice legal practitioners are actively encouraging and targeting the public to seek legal recourse in the event of something going wrong.</p>
<p>It has also been argued that the 2008 amendments to the <a href="https://www.gov.za/documents/road-accident-fund-amendment-act-0">Road Accident Fund Act</a> are a contributing factor as they reduced the payout levels. This could have pushed legal practitioners towards new avenues of personal injury law in the form of malpractice litigation. </p>
<p>The <a href="https://www.gov.za/documents/contingency-fees-act">Contingency Fee Act</a> of 1999 may be another contributing factor. The Act provides for a “no win, no fee” system. This allows people who would not normally be able to afford litigation to do so. It may also lead to inflated claims.</p>
<p>Other developments – such as a much more patient-centred approach to healthcare – have made patients more aware of their rights. Patients also have higher expectations. They are demanding more of their doctors and are less likely to tolerate indifference or poor management of any complications.</p>
<h2>Possible solutions</h2>
<p>Because there is no single cause, there is no single solution. This is a complex matter.</p>
<p>The South African Law Reform Commission has proposed a three-tiered strategy to reduce medico-legal litigation.</p>
<p>The first is at the primary level. In a bid to improve the quality of care the government has regulated <a href="https://www.idealhealthfacility.org.za/">a set of care standards</a>. These span a wide spectrum from clinical standards to the working environment, infrastructure, human resources and technology to ensure better and safer patient experiences and clinical outcomes. Healthcare facilities will have to develop quality improvement plans. </p>
<p>Secondary prevention relates to the management of complaints and the importance of early engagement. It includes establishing an independent health complaints committee, strengthening systems to monitor adverse outcomes, moving from a culture of blame to one of learning and receiving feedback from medico-legal claims.</p>
<p>Tertiary prevention, lastly, would entail:</p>
<ul>
<li><p>Professional and comprehensive management of all medico-legal litigation </p></li>
<li><p>Fast-tracking the resolution of low-value claims with minimal expenditure </p></li>
<li><p>Just compensation of injured patients or bereaved families </p></li>
<li><p>Assisting plaintiffs “in kind”, for example by securing school placement of disabled minors </p></li>
<li><p>Securing settlement awards in trusts to ensure appropriate accounting and payment of funds for future medical care </p></li>
<li><p>Return of unspent funds to the national health department in the event of premature death </p></li>
<li><p>Challenging false or opportunistic practices which artificially drive up the value of claims </p></li>
<li><p>Ensuring that all public money spent on settlement of valid claims is just and appropriate.</p></li>
</ul>
<p>More could be done. For example, the government should publish annual medico-legal claims reports with relevant data. This would make it possible to identify trends that can guide future policy.</p>
<p>An obvious solution is improving the healthcare system and quality of care. The government could implement its own <a href="https://www.spotlightnsp.co.za/wp-content/uploads/2020/08/2030-HRH-strategy-19-3-2020.pdf">Human Resources for Health Strategy 2030</a>, which might alleviate the understaffing of many healthcare facilities.</p>
<p>Reducing claims also requires the government to ensure that healthcare facilities are properly funded and staffed. And it should suspend medical licences in instances of gross negligence resulting in death. Charges of culpable homicide might even be considered.</p>
<p>Legislation alone cannot address the causes of the rise in claims. But some legal reform and the development of fit-for-purpose legislation might be helpful. This would address procedure, create bodies or authorities to deal with some of the causes, create novel interventions and change the method and timing of compensation. </p>
<p>Lastly, the method of compensation might also be reconsidered. It could move away from lump-sum payments to structured settlements consisting of payment for harm already suffered, periodic payments for future medical or other costs, or even payment in kind, such as healthcare services provided by the state.</p><img src="https://counter.theconversation.com/content/187393/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Larisse Prinsen 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 number and value of medico-legal claims has increased.Larisse Prinsen, Senior lecturer in law, University of the Free StateLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1876742022-08-09T21:20:01Z2022-08-09T21:20:01ZPower to the patient: Person-centred care and how you can take your health into your own hands<figure><img src="https://images.theconversation.com/files/477897/original/file-20220805-24-ttyy19.jpg?ixlib=rb-1.1.0&rect=465%2C0%2C5758%2C4118&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Putting patients at the centre of care means seeing them as a whole person and treating them as a partner in their journey to better health.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p><a href="https://doi.org/10.1371/journal.pone.0229923">Person-centred care</a> (also known as patient-centred care) is the philosophy of giving power back to patients and putting them “at the centre” of care. </p>
<p>It can lead to <a href="https://doi.org/10.1089/dis.2006.9.302">lower health-care spending</a> and <a href="https://doi.org//10.1002/14651858.CD003267.pub2">better patient health outcomes</a>. That’s why person-centred care has become a <a href="https://healthadvocates.cma.ca/news/public-and-health-professionals-agree-canada-needs-patient-centered-care">top priority</a> in Canada.</p>
<p>As a health services researcher working with an <a href="https://interrai.org/">international group of researchers</a>, my goal is to learn more about how person-centred care works and how we can use people’s voices and health information to make it happen. </p>
<p>I’m also a person who uses the health-care system, which is why I know it’s important for everyone to know what person-centred care is, where it came from and how each of us play a part in building a better health-care system. </p>
<h2>What is person-centred care?</h2>
<p>“Putting patients at the centre” is a really vague goal. That’s why your family doctor, pharmacist, physiotherapist and everyone in between probably has different ideas about how to be person-centred. Here are <a href="http://www.ejpch.org/ejpch/article/view/1337">three signs that the care you’re getting is person-centred</a>:</p>
<ol>
<li><p><strong>They see you as a whole person</strong>: You are unique and complex. You have wants, needs, friends and families. That’s why your health-care provider wants to hear what you have to say and respects your right to make choices about your own body.</p></li>
<li><p><strong>They treat you like a partner</strong>: Rather than tell you what to do, your health-care provider listens, teaches, and partners with you to build a care plan that aligns with your goals. Like any partnership, trust is key. You trust them, and they trust you.</p></li>
<li><p><strong>They help you navigate your journey to better health</strong>: They listen to your concerns and validate your feelings. They also give helpful advice using words you understand and point you to other resources when you need them.</p></li>
</ol>
<h2>Where did this idea come from?</h2>
<figure class="align-center ">
<img alt="A woman in a hospital gown and a woman in scrubs and a stethoscope looking at tablet together" src="https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/477901/original/file-20220805-7849-dgbox8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Patients were once expected to be passive in their own care. Person-centred care encourages patients to self-monitor, self-care and advocate for themselves.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>A hundred years ago in the western medical system, <a href="https://doi.org/10.1136%2Fbmj.318.7200.1756">patients were expected</a> to be passive. The health-care provider was the knowledge keeper for your body, so you did what they said without question. That’s why it was revolutionary when, in the 1950s, psychologists started saying that <a href="https://doi.org/10.2147%2FJMDH.S299765">people can cure their own problems when they get the right support</a>. </p>
<p>In the following decades, other experts (including several <a href="https://cdnmedhall.ca/patient-care">influential Canadians</a>) brought even more ideas, like how patients should be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2236836/">seen as unique human beings</a>. (<a href="https://cancer.ca/en/treatments/complementary-therapies/aboriginal-traditional-healing">Indigenous peoples understood this</a> long before colonizers did.)</p>
<h2>Three ways to push for person-centred care</h2>
<p><a href="https://doi.org/10.1136%2Fbmj.320.7234.526">Person-centred care has become essential</a>. Especially when it comes to <a href="https://www.who.int/news-room/fact-sheets/detail/ageing-and-health">chronic diseases</a>, you need to self-monitor, self-care and advocate for yourself. So what can you do to take your health into your own hands?</p>
<figure class="align-right ">
<img alt="Medical stethoscope with red paper heart on white surface" src="https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476538/original/file-20220728-25-zyqwv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Learning about their own conditions and care can empower patients. Libraries, online resources, workshops and service directories can be useful resources.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/medical-stethoscope-with-red-paper-heart-on-white-surface-4386467/">Karolina Grabowska/Pexels</a></span>
</figcaption>
</figure>
<ol>
<li><p><strong>Do your research</strong>: Information is power. Learn as much as you can about your health condition(s) <a href="https://doi.org/10.2196%2Fjmir.5729">to gain confidence, make appointments more efficient and even improve your relationship with your health-care provider</a>. Don’t know where to start? <a href="https://medium.com/everylibrary/what-exactly-does-a-librarian-do-a75b89780370">Ask your local librarian</a> if they have any research tips or book suggestions. Join a virtual community and look for learning opportunities (like workshops or webinars at <a href="https://alzheimer.ca/en">the Alzheimer’s society</a>, <a href="https://www.diabetes.ca/resources/webinars?Categories=&SearchText=&Sort=&Page=1">Diabetes Canada</a> or other big organizations). If you have a health-care provider, Google them to find out what they do, if they speak your native language and what their training background is. If you don’t, service directories may help you find a health-care provider who meets your needs. For example, <a href="https://www.rainbowhealthontario.ca/lgbt2sq-health/service-provider-directory/">Rainbow Health Ontario</a> has a directory of LGBT2SQ-friendly care providers.</p></li>
<li><p><strong>Be prepared</strong>: Don’t be afraid to bring in a list of questions and concerns, and take notes <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/">to help you remember what the health-care provider said</a> (for example, jargon you’ll want to look up later). You can also bring in a support person, like a friend or family member, <a href="https://doi.org/10.4103/2249-4863.120767">for emotional support, to advocate for you, to help with decision-making or to take notes</a>. Show your health-care provider that you want to know more about your health and <a href="https://www.cbc.ca/news/canada/first-person-navigating-health-care-1.6514065">don’t be afraid to speak up if you’re feeling dismissed</a>. </p></li>
<li><p><strong>Give feedback</strong>: The challenge with person-centred care is that <a href="https://doi.org/10.1371/journal.pone.0229923">problems in the health system</a>, like staffing shortages, can make it harder to do. But you can help change the system. <a href="https://hbr.org/2021/05/frustrated-patients-are-making-health-care-workers-jobs-even-harder">Be kind to your health-care providers.</a> Share your opinions (on the good and the bad) by filling out patient surveys when you get them. You can also join a patient and family advisory council, committee or network. These are groups of people with lived experience that help improve the health-care system. As a member of a patient and family advisory council myself, I have given feedback on hiring decisions, safety planning, education and more. Look online to find a local, provincial or national group (like the <a href="https://www.patientadvisors.ca/">Patient Advisors Network</a>). </p></li>
</ol>
<p>While you might not be able to change the system on your own, always remember that your voice matters.</p><img src="https://counter.theconversation.com/content/187674/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda receives funding from the Ontario Government as part of the Ontario Graduate Scholarship (OGS) program. She is also affiliated with the Waterloo-Wellington Regional Cancer Program Patient and Family Advisory Council and is a member of the Patient Advisors Network.</span></em></p>Person-centred care sees the patient as a whole, unique individual and puts them at the centre of their health decisions.Amanda Aguilar da Nova, PhD Candidate, Faculty of Health, University of WaterlooLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1315532020-07-15T04:26:04Z2020-07-15T04:26:04ZHIV testing people who spit at police or health workers won’t actually protect them<figure><img src="https://images.theconversation.com/files/339952/original/file-20200605-67355-6wf9k4.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C664&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/sydney-nsw-australia-february-11-2020-1643342308">Shutterstock</a></span></figcaption></figure><p>People who expose a police officer or emergency worker to body fluids would be compelled to have their blood tested for HIV, hepatitis B and hepatitis C, under a <a href="https://www.dcj.nsw.gov.au/__data/assets/pdf_file/0020/726221/Mandatory-disease-testing-for-those-who-attack-frontline-workers.pdf">proposed law in NSW</a>. </p>
<p>But this law isn’t needed to protect first responders. We already have evidence-based protocols that are working well to protect them from blood-borne infections.</p>
<p>Rather, the proposed law is a political reaction to a problem that doesn’t need fixing. It is also not supported by scientific evidence or <a href="http://testingportal.ashm.org.au/hiv">Australian government policy on HIV testing</a>.</p>
<h2>What is NSW proposing?</h2>
<p>In November last year, the NSW government <a href="https://www.dcj.nsw.gov.au/__data/assets/pdf_file/0020/726221/Mandatory-disease-testing-for-those-who-attack-frontline-workers.pdf">proposed legislation</a> which gives authorities the power to test a person for HIV, hepatitis B or hepatitis C if they have deliberately exposed a front-line worker to their body fluids (saliva or blood).</p>
<p>Examples might be if a person bites a police officer restraining them during an arrest or protest; someone biting or scratching a youth justice or corrections officer; or a person behaving unpredictably, exposing ambulance officers to their body fluids.</p>
<p>The mandatory testing order would come from senior officers within the worker’s own agency. If the person does not comply, they can be forced to do so. They have 48 hours to appeal to the NSW chief health officer. Anyone who refuses a mandatory testing order will be committing an offence, with a maximum 12 months prison term or an A$11,000 fine, or both.</p>
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Read more:
<a href="https://theconversation.com/swearing-in-public-is-still-illegal-but-you-probably-wont-be-charged-if-youre-white-127512">Swearing in public is still illegal, but you probably won’t be charged if you’re white</a>
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</em>
</p>
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<h2>Is this happening elsewhere?</h2>
<p>Five states have legislation that allows mandatory testing, according to a <a href="https://napwha.org.au/wp-content/uploads/2019/09/2019_NAPWHA_TheSystemIsBroken.pdf">report</a> by the National Association of People Living with HIV. </p>
<p>The proposed NSW model is closest to the one <a href="https://napwha.org.au/wp-content/uploads/2019/09/2019_NAPWHA_TheSystemIsBroken.pdf">Western Australia</a> introduced in 2014, where police can order testing. This resulted in 377 testing orders in the first four years. </p>
<p>In contrast, in <a href="https://napwha.org.au/wp-content/uploads/2019/09/2019_NAPWHA_TheSystemIsBroken.pdf">Victoria</a> the chief health officer has the power to order a test or issue a public health order to enforce it if necessary. In those same four years, <a href="https://napwha.org.au/wp-content/uploads/2019/09/2019_NAPWHA_TheSystemIsBroken.pdf">not a single person</a> was ordered to be tested.</p>
<h2>What’s the risk of transmission anyway?</h2>
<p>Outside of sexual transmission, HIV is transmitted through blood. Police and corrections officers are far less likely to be exposed to a blood-borne virus than hospital workers. <a href="https://doi.org/10.1093/occmed/kqn083">When exposure does occur</a>, it tends to be less serious. </p>
<p>There does not appear to be any recorded case of an Australian police officer being infected with HIV in the course of their duties.</p>
<p>Rates of HIV infection in the community are dropping anyway. <a href="https://kirby.unsw.edu.au/report/hiv-viral-hepatitis-and-sexually-transmissible-infections-australia-annual-surveillance">Around 0.1%</a> of the Australian population is living with HIV. <a href="https://kirby.unsw.edu.au/report/hiv-viral-hepatitis-and-sexually-transmissible-infections-australia-annual-surveillance">The vast majority</a> are on effective treatment which reduces transmission to zero. By 2022, Australia’s aiming for <a href="https://www1.health.gov.au/internet/main/publishing.nsf/Content/ohp-bbvs-1/$File/HIV-Eight-Nat-Strategy-2018-22.pdf">virtual elimination</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=337&fit=crop&dpr=1 600w, https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=337&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=337&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/339954/original/file-20200605-67387-1nt44ky.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"></a>
<figcaption>
<span class="caption">The chance of front-line workers contracting HIV at work are almost zero.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/coogee-beach-sydney-australia-15-december-776091742">Shutterstock</a></span>
</figcaption>
</figure>
<p>As hepatitis C and HIV are blood-borne viruses, saliva alone cannot transmit them. Sometimes, the mouth can be contaminated with blood, particularly if there has been traumatic injury. But contact between bloody saliva and intact skin <a href="https://ashm.org.au/resources/sexual-health-resources-list/police-and-blood-borne-viruses/">does not transmit hepatitis C or HIV</a>. </p>
<p><a href="https://dx.doi.org/%2010.1111/hiv.12625">A 2018 study</a> bringing together more than 30 years of studies in HIV transmission concluded:</p>
<blockquote>
<p>There is no risk of transmitting HIV through spitting, and the risk through biting is negligible.</p>
</blockquote>
<p><a href="https://i-base.info/htb/34171">A similar 2018 study</a> looked at the risk of hepatitis C transmission and concluded the risk “appears to be very low”.</p>
<p>Of the blood-borne viruses, hepatitis B, the most transmissible of these viruses, is completely preventable through a vaccine all front-line workers receive.</p>
<h2>What’s happening now?</h2>
<p>In NSW and nationally, if someone is exposed to another person’s body fluids at work, they are assessed by health care workers in their agency. </p>
<p>The nature of the exposure, the possibility the other person could have a blood-borne virus (or if known, whether they are infected) and the resulting risk are considered when evaluating both the injury and the need for testing. If needed, they are tested according to <a href="http://testingportal.ashm.org.au/hiv">policies</a> informed by scientific evidence.</p>
<p>But the overwhelming majority of injuries, including bites, <a href="https://dx.doi.org/%2010.1111/hiv.12625">do not</a> <a href="https://i-base.info/htb/34171">carry a risk of transmision</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/339956/original/file-20200605-67399-fgwogw.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">We already have evidence-based protocols to decide who needs testing for blood-borne viruses.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/swab-pressed-onto-injection-site-during-521751805">Shutterstock</a></span>
</figcaption>
</figure>
<p>In the rare scenario, where the risk of HIV infection cannot be ruled out, the worker may be offered medications to prevent infection, and follow-up blood tests.
<a href="http://www.pep.guidelines.org.au/">These medications</a> dramatically reduce risk of transmission but must be taken within 72 hours of the exposure. </p>
<p>Workers potentially exposed to hepatitis C can be monitored for infection, and given medications with <a href="https://doi.org/10.1111/liv.13673">near 100% cure rate</a> if required. </p>
<p>So current measures are more than adequate to deal with all situations a police officer or other front-line worker will confront, and have been so since these issues were first addressed in the early 1990s.</p>
<h2>Compulsory testing could cause harm</h2>
<p>Front-line workers deserve our support and protection. But if these workers feel anxiety or distress related to their risk of contracting blood-borne viruses then their health services must more adequately reassure them. </p>
<p>New measures won’t help reduce their already low risk of transmission and therefore don’t provide any additional reassurance. Focussing on getting the other person tested might increase their anxiety when the risk is negligible, irrespective of the person’s status. </p>
<p>In the rare higher risk situations, perhaps an ambulance officer injured while at a car accident where there is massive blood loss, the risk of a blood-borne infection needs to be assessed and <a href="https://ashm.org.au/resources/sexual-health-resources-list/police-and-blood-borne-viruses/">preventive medicine</a> offered. Delaying this assessment while waiting for the results of compulsory testing has the real potential to harm the worker. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/patients-have-rights-heres-how-to-use-yours-121637">Patients have rights. Here's how to use yours</a>
</strong>
</em>
</p>
<hr>
<p>The proposed legislation also <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835402/">stigmatises</a> people living with blood-borne viruses, incorrectly depicting them as dangerous, creating unnecessary fear, <a href="https://hivlawcommission.org/supplement/">leading to discrimination</a>.</p>
<p>We are working with the board of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (the peak body representing HIV, viral hepatitis and sexual health workers) and <a href="https://hivlegal.ashm.org.au/mandatory-testing-for-hiv/">oppose mandatory testing measures</a> as neither necessary nor useful.</p><img src="https://counter.theconversation.com/content/131553/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nicholas Medland's research receives institutional funding from the Australian Government National Health and Medical Research Council and from Gilead Sciences.</span></em></p><p class="fine-print"><em><span>Elizabeth Crock is affiliated with ANZANAC Victorian Branch (Australian and New Zealand Association of Nurses in AIDS Care), an Australian Nursing and Midwifery Federation Special Interest Group.
</span></em></p>Proposals in NSW to force someone who spits at or bites a frontline worker to be tested for HIV and other blood-borne viruses are a real problem - for workers and the public.Nicholas Medland, Sexual health physician, epidemiologist, researcher. (President-elect and vice-president Australasian Society of HIV, Viral Hepatitis and Sexual Health Medicine), UNSW SydneyElizabeth Crock, Honorary Senior Research Fellow, Faculty of Medicine, Dentistry and Health Sciences., University of Melbourne; HIV Clinical Nurse Consultant with Bolton Clarke, Board Member Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM), The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1317522020-03-13T13:58:54Z2020-03-13T13:58:54ZWith coronavirus containment efforts, what are the privacy rights of patients?<figure><img src="https://images.theconversation.com/files/318181/original/file-20200302-18279-tkjjev.jpg?ixlib=rb-1.1.0&rect=44%2C0%2C5000%2C3323&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People are reflected on a volunteer's sunglasses outside a neighborhood alley in Beijing that is closed due to the COVID-19 outbreak on March 1, 2020. </span> <span class="attribution"><span class="source">AP Photo/Andy Wong</span></span></figcaption></figure><p>As an epicenter of the COVID-19 outbreak, China has launched an unprecedented effort to control the disease, locking down Wuhan in the province of Hubei — <a href="https://www.businessinsider.com/wuhan-coronavirus-what-life-like-inside-quarantined-city-china-2020-2">a megacity of 11 million people</a>. </p>
<p>These measures may have helped protect against transmission, but
whether patients’ information has been properly protected remains in question. Personal information, such as national ID number, residential addresses and occupations have been <a href="https://www.wsj.com/articles/china-marshals-the-power-of-its-surveillance-state-in-fight-against-coronavirus-11580831633">leaked online</a> for people who travelled <a href="https://apnews.com/7f7336d2ed099936bd59bf8cb7f43756">from Wuhan to Shanghai or Inner Mongolia</a>. A citizen discovered his name in online lists <a href="https://www.nytimes.com/2020/02/03/business/china-coronavirus-wuhan-surveillance.html">after he reported to authorities that he had returned from Wuhan to his hometown of Linhai</a>. </p>
<p>During this unusual time, concerns about information safety are based on the real possibility of prejudice and harassment. Information breaches can also lead to identity theft.</p>
<p>How did China respond to this emergent health incident during the lunar new year celebration, a period of <a href="https://www.youtube.com/watch?v=eFakFlddIg0">the largest annual human migration in the world</a>, and how did the response influence the privacy of ordinary people?</p>
<h2>Tracking patients</h2>
<p>To understand the context of the illegal information disclosure, we must look at the patient tracking processes used in China and other regions, and the important role of surveillance technologies.</p>
<p>Online maps are good resources for concerned citizens to check whether there is an imminent disease threat in their area. <a href="https://gisanddata.maps.arcgis.com/apps/opsdashboard/index.html#/bda7594740fd40299423467b48e9ecf6">A dashboard developed by Johns Hopkins University</a> presents the coronavirus outbreak using data from the Centers for Disease Control and the World Health Organization. A <a href="https://www.healthmap.org/wuhan/index.php">health map</a> by <a href="http://www.childrenshospital.org/">Boston Children’s Hospital</a>, on the other hand, summarizes epidemic alerts through news reports and social media posts.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/318184/original/file-20200303-18295-fp3u3w.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">A HealthMap worker at Boston Children’s Hospital monitors disease outbreaks on Feb. 13, 2020. Behind him is a world map with coloured dots marking cases of COVID-19.</span>
<span class="attribution"><span class="source">(AP Photo/Steven Senne)</span></span>
</figcaption>
</figure>
<p>Artificial intelligence is also tracking the spatial patterns of the epidemic. <a href="https://www.wired.com/story/ai-epidemiologist-wuhan-public-health-warnings/">A Canadian company called BlueDot</a> collects multilingual news reports and data from official public health databases to predict the potential of future outbreaks. <a href="https://www.wired.com/story/how-ai-tracking-coronavirus-outbreak/">Researchers from Harvard Medical School</a> gather authoritative information plus social media data to explore the geographical trends of the disease.</p>
<p>However, Chinese officials need more accurate locations of potential virus spreaders.</p>
<p>Telecommunication companies in China <a href="https://www.nytimes.com/2020/02/13/world/asia/china-coronavirus.html">announced a feature</a> that generates a list of recently visited provinces when subscribers text a hotline. Rail stations such as the one in Yiwu required passengers to show their travel history from the hotline before boarding a train, screening out people who had been to Hubei province. </p>
<p>Before this feature rolled out, China had been using <a href="https://www.reuters.com/article/us-china-health-surveillance/coronavirus-brings-chinas-surveillance-state-out-of-the-shadows-idUSKBN2011HO">licence plates</a> and <a href="https://www.reuters.com/article/us-china-health-surveillance/coronavirus-brings-chinas-surveillance-state-out-of-the-shadows-idUSKBN2011HO">facial recognition technology</a> to track people who left Wuhan before the city’s lockdown. <a href="https://globalnews.ca/news/6535353/china-coronavirus-drones-quarantine/">Drones</a> were also used to remind people to wear masks in public areas.</p>
<p>Some municipal governments have “innovative” methods other than technological approaches. Starting Feb. 7, at least three Chinese cities including Hangzhou, Ningbo and Sanya <a href="https://qz.com/1799725/chinese-cities-try-to-flush-out-coronavirus-patients-by-stopping-medicine-sales/">pulled fever and cough drugs off pharmacy shelves</a> so patients with such symptoms would have to visit doctors at hospitals. Some officials from Hebei province in northern China turned “neighbour against neighbour” by <a href="https://www.nytimes.com/2020/02/03/business/china-coronavirus-wuhan-surveillance.html">offering 1,000 RMB</a> (about $190) to residents for each person from Wuhan they reported.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/318186/original/file-20200303-18275-x07180.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">A worker wearing a face mask directs traffic at a highway toll gate in Wuhan, China on Jan. 21, 2020. Licence plates were used to track people who left Wuhan before the city was locked down to try to contain the COVID-19 outbreak.</span>
<span class="attribution"><span class="source">(Chinatopix via AP)</span></span>
</figcaption>
</figure>
<p>Outside of mainland China, <a href="https://fortune.com/2020/02/05/coronavirus-patient-tracking-government-surveillance/">the Hong Kong government</a> has issued tracking wristbands to families returning from Hubei province. These ensure the Department of Health is notified if the wearer leaves their home during a 14-day quarantine period. </p>
<p>Similar strategies have been used <a href="https://www.telegraph.co.uk/news/2020/02/03/taiwan-uses-smartphones-monitor-patients-quarantined-virus-scare/">in Taiwan, where smartphones have been assigned</a> to notify police if patients are not quarantined at home. Whether the monitoring technologies turned home quarantine to “house arrest” remains debatable.</p>
<h2>Information disclosure</h2>
<p>Tracking down patients is troublesome enough, but whether their sensitive information is released depends on local administrations.</p>
<p>A study found that <a href="https://doi.org/10.3390/ijerph17010305">after a list of hospitals with MERS-CoV patients was disclosed to the public in South Korea in 2015, the number of laboratory-confirmed MERS-CoV patients decreased significantly</a>. The study published in January indicates that responsible information disclosure helps control infectious respiratory diseases.</p>
<p>Possibly inspired by previous experience, the South Korean government is extremely open about communicating patient activities to the public. Officials <a href="https://www.dailymail.co.uk/news/article-8011197/South-Korea-tracks-coronavirus-patients-locations-using-phone-data-publishes-online.html">published travel data on the 29 confirmed patients on the Ministry of Health and Welfare website</a> compiled by aggregating data from cell phone, credit card and transit card records, as well as CCTV footage. The Hong Kong government had a similar measure, publishing <a href="https://www.chp.gov.hk/files/pdf/list_of_buildings_en.pdf">a list of apartments</a> with quarantined residents on the Department of Health’s website.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/318191/original/file-20200303-18299-1c147ip.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">A volunteer wearing a protective face mask emerges from the barricaded entrance to a community in Wuhan, China on Feb. 22, 2020.</span>
<span class="attribution"><span class="source">Chinatopix via AP</span></span>
</figcaption>
</figure>
<p>Japanese authorities, however, are <a href="https://www.japantimes.co.jp/news/2020/02/10/national/japan-cities-prefectures-travel-details-coronavirus-patients/#.Xks1djJKiUk">in disagreement</a> on disclosing travel data on coronavirus patients. The Japanese Health, Labour and Welfare Ministry provided no details. However, after the driver of a bus that transported tourists from Wuhan became infected with COVID-19, the Nara Prefectural Government shared the locations the bus had visited.</p>
<p>Some U.S. states are in line with the Japanese Health Ministry and make patient privacy a priority. On Feb. 5, Ohio passed <a href="https://wtov9.com/news/local/new-privacy-protocol-in-place-as-coronavirus-concerns-heighten">a new protocol</a> protecting patients’ places of origin while their cases are under investigation. Florida has <a href="https://www.sun-sentinel.com/news/fl-ne-coronavirus-privacy-20200207-zcyt7b7y7vg6lcs4js5ezjha3a-story.html">a similar state law</a> that prevents public access to information about suspected patients.</p>
<h2>Legal requirements</h2>
<p>While patient information disclosure practices vary from one administration to another, laws are in place to guard against improper management of sensitive information.</p>
<p>In China, the personal information protection regulation is called <a href="https://www.newamerica.org/cybersecurity-initiative/digichina/blog/translation-cybersecurity-law-peoples-republic-china/">Cybersecurity Law of the People’s Republic of China</a>, and best practices of personal information handling are described in <a href="https://www.newamerica.org/cybersecurity-initiative/digichina/blog/translation-chinas-personal-information-security-specification/">Personal Information Security Specification</a>.</p>
<p>A <a href="https://www.newamerica.org/cybersecurity-initiative/digichina/blog/translation-chinese-authorities-emphasize-data-privacy-and-big-data-analysis-coronavirus-response/">notice</a> from the Cyberspace Administration of China (CAC) on Feb. 9 clearly states that personal information such as “names, ages, identity card numbers, telephone numbers, household addresses and other such information” may not be used for purposes other than “epidemic control and disease prevention.” </p>
<p>In the United States, the <a href="https://www.hhs.gov/hipaa/for-professionals/security/laws-regulations/index.html">Health Insurance Portability and Accountability Act</a> (HIPAA) explains under what circumstances health-care professionals may disclose patient information to families, public health agencies and the media. The <a href="https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html">Family Educational Rights and Privacy Act</a> (FERPA) provides additional guidance for health practitioners in different settings such as university hospitals.</p>
<p>U.S. Department of Health and Human Services also posted a <a href="https://www.hhs.gov/sites/default/files/february-2020-hipaa-and-novel-coronavirus.pdf">bulletin</a> to remind health-care workers that information about “an identifiable patient” may not be disclosed to the media or the public without “the patient’s written authorization” except in special circumstances.</p>
<p>In Canada, <a href="https://www.priv.gc.ca/en/privacy-topics/privacy-laws-in-canada/the-personal-information-protection-and-electronic-documents-act-pipeda/pipeda_brief/">the Personal Information Protection and Electronic Documents Act (PIPEDA)</a> is the national privacy law that regulates personal information disclosure, including health-related practices. Under PIPEDA, and under provincial patient privacy legislation where it exists, consent is required to collect, use or disclose an individual’s personal health information. To date, only <a href="https://globalnews.ca/news/6617581/coronavirus-cases-canada-timeline/">unidentifiable patient information has been released by health officials</a> to create a timeline of cases in the country. </p>
<p>With strict enforcement of privacy law, wide disease prevention education and proper location information disclosure, it is hoped that patient information leaks will diminish in China, and patient privacy will be better protected during an epidemic outbreak.</p><img src="https://counter.theconversation.com/content/131752/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hongyu Zhang 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 measures taken in China to contain the COVID-19 outbreak have raised concerns about patient privacy. As other countries bring in containment measures, will patient privacy be compromised?Hongyu Zhang, PhD Student in Geography, McGill UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1293522020-01-16T19:04:23Z2020-01-16T19:04:23ZHidden women of history: Catherine Hay Thomson, the Australian undercover journalist who went inside asylums and hospitals<figure><img src="https://images.theconversation.com/files/310375/original/file-20200115-134772-1he8wcv.jpg?ixlib=rb-1.1.0&rect=2%2C2%2C855%2C556&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Catherine Hay Thomson went undercover as an assistant nurse for her series on conditions at Melbourne Hospital. </span> <span class="attribution"><a class="source" href="https://nla.gov.au/nla.obj-147135448/view">A. J. Campbell Collection/National Library of Australia</a></span></figcaption></figure><p><em>In this series, we look at under-acknowledged women through the ages.</em></p>
<p>In 1886, a year before American journalist Nellie Bly <a href="https://www.washingtonpost.com/history/2019/07/28/she-went-undercover-expose-an-insane-asylums-horrors-now-nellie-bly-is-getting-her-due/">feigned insanity</a> to enter an asylum in New York and became a household name, Catherine Hay Thomson arrived at the entrance of Kew Asylum in Melbourne on “a hot grey morning with a lowering sky”. </p>
<p>Hay Thomson’s two-part article, <a href="https://trove.nla.gov.au/newspaper/article/6089302">The Female Side of Kew Asylum</a> for The Argus newspaper revealed the conditions women endured in Melbourne’s public institutions. </p>
<p>Her articles were controversial, engaging, empathetic, and most likely the first known by an Australian female undercover journalist.</p>
<h2>A ‘female vagabond’</h2>
<p>Hay Thomson was accused of being a spy by Kew Asylum’s supervising doctor. The Bulletin called her “the female vagabond”, a reference to Melbourne’s famed undercover reporter of a decade earlier, Julian Thomas. But she was not after notoriety. </p>
<p>Unlike Bly and her ambitious contemporaries who turned to “stunt journalism” to escape the boredom of the women’s pages – one of the few avenues open to women newspaper writers – Hay Thomson was initially a teacher and ran <a href="https://www.austlit.edu.au/austlit/page/A79772">schools</a> with her mother in Melbourne and Ballarat. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=372&fit=crop&dpr=1 600w, https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=372&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=372&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=467&fit=crop&dpr=1 754w, https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=467&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/310830/original/file-20200120-69568-x4hyux.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=467&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Hay Thomson, standing centre with her mother and pupils at their Ballarat school, was a teacher before she became a journalist.</span>
<span class="attribution"><span class="source">Ballarat Grammar Archives/Museum Victoria</span></span>
</figcaption>
</figure>
<p>In <a href="https://trove.nla.gov.au/newspaper/article/207826580?searchTerm=%22Catherine%20Hay%20Thomson%22&searchLimits=exactPhrase=Catherine+Hay+Thomson%7C%7C%7CanyWords%7C%7C%7CnotWords%7C%7C%7CrequestHandler%7C%7C%7CdateFrom%7C%7C%7CdateTo%7C%7C%7Csortby">1876</a>, she became one of the first female students to sit for the matriculation exam at Melbourne University, though women weren’t allowed to study at the university until 1880. </p>
<h2>Going undercover</h2>
<p>Hay Thomson’s series for The Argus began in March 1886 with a piece entitled <a href="https://trove.nla.gov.au/newspaper/article/6087478?searchTerm=%22The%20Inner%20Life%20of%20the%20Melbourne%20Hospital%22&searchLimits=">The Inner Life of the Melbourne Hospital</a>. She secured work as an assistant nurse at Melbourne Hospital (now <a href="https://www.thermh.org.au/about/our-history">The Royal Melbourne Hospital</a>) which was under scrutiny for high running costs and an abnormally high patient death rate. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=362&fit=crop&dpr=1 600w, https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=362&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=362&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=455&fit=crop&dpr=1 754w, https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=455&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/310150/original/file-20200115-93792-1rli38t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=455&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Doctors at Melbourne Hospital in the mid 1880s did not wash their hands between patients, wrote Catherine Hay Thomson.</span>
<span class="attribution"><a class="source" href="https://viewer.slv.vic.gov.au/?entity=IE1125263&mode=browse">State Library of Victoria</a></span>
</figcaption>
</figure>
<p>Her articles increased the pressure. She observed that the assistant nurses were untrained, worked largely as cleaners for poor pay in unsanitary conditions, slept in overcrowded dormitories and survived on the same food as the patients, which she described in stomach-turning detail.</p>
<p>The hospital linen was dirty, she reported, dinner tins and jugs were washed in the patients’ bathroom where poultices were also made, doctors did not wash their hands between patients.</p>
<p>Writing about a young woman caring for her dying friend, a 21-year-old impoverished single mother, Hay Thomson observed them “clinging together through all fortunes” and added that “no man can say that friendship between women is an impossibility”.</p>
<p>The Argus editorial called for the setting up of a “ladies’ committee” to oversee the cooking and cleaning. Formal nursing training was introduced in Victoria three years later.</p>
<h2>Kew Asylum</h2>
<p>Hay Thomson’s next <a href="https://trove.nla.gov.au/newspaper/article/6089302">series</a>, about women’s treatment in the Kew Asylum, was published in March and April 1886. </p>
<p>Her articles predate <a href="https://www.sas.upenn.edu/%7Ecavitch/pdf-library/Bly_TenDays.pdf">Ten Days in a Madhouse</a> written by Nellie Bly (born <a href="https://www.biography.com/activist/nellie-bly">Elizabeth Cochran</a>) for Joseph Pulitzer’s <a href="https://www.britannica.com/topic/New-York-World">New York World</a>. </p>
<p>While working in the asylum for a fortnight, Hay Thomson witnessed overcrowding, understaffing, a lack of training, and a need for woman physicians. Most of all, the reporter saw that many in the asylum suffered from institutionalisation rather than illness. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/310146/original/file-20200115-151844-1hs1bdy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Kew Asylum around the time Catherine Hay Thomson went undercover there.</span>
<span class="attribution"><a class="source" href="https://www.slv.vic.gov.au/images?page=1&keyword=kew%20asylum&smt=1">Charles Rudd/State Library of Victoria</a></span>
</figcaption>
</figure>
<p>She described “the girl with the lovely hair” who endured chronic ear pain and was believed to be delusional. The writer countered “her pain is most probably real”.</p>
<p>Observing another patient, Hay Thomson wrote: </p>
<blockquote>
<p>She requires to be guarded – saved from herself; but at the same time, she requires treatment … I have no hesitation in saying that the kind of treatment she needs is unattainable in Kew Asylum.</p>
</blockquote>
<p>The day before the first asylum article was published, Hay Thomson gave evidence to the final sitting of Victoria’s <a href="https://www.parliament.vic.gov.au/papers/govpub/VPARL1886No15Pi-clxxii.pdf">Royal Commission on Asylums for the Insane and Inebriate</a>, pre-empting what was to come in The Argus. Among the Commission’s final recommendations was that a new governing board should supervise appointments and training and appoint “lady physicians” for the female wards.</p>
<h2>Suffer the little children</h2>
<p>In May 1886, <a href="https://trove.nla.gov.au/newspaper/article/6095144/276118">An Infant Asylum written “by a Visitor”</a> was published. The institution was a place where mothers – unwed and impoverished - could reside until their babies were weaned and later adopted out. </p>
<p>Hay Thomson reserved her harshest criticism for the absent fathers:</p>
<blockquote>
<p>These women … have to bear the burden unaided, all the weight of shame, remorse, and toil, [while] the other partner in the sin goes scot free.</p>
</blockquote>
<p>For another article, <a href="https://trove.nla.gov.au/newspaper/article/6099966?searchTerm=%22Among%20the%20Blind%3A%20Victorian%20Asylum%20and%20School%22&searchLimits=">Among the Blind: Victorian Asylum and School</a>, she worked as an assistant needlewoman and called for talented music students at the school to be allowed to sit exams.</p>
<p>In <a href="https://trove.nla.gov.au/newspaper/article/254464232?searchTerm=%22A%20Penitent%E2%80%99s%20Life%20in%20the%20Magdalen%20Asylum%22&searchLimits=">A Penitent’s Life in the Magdalen Asylum</a>, Hay Thomson supported nuns’ efforts to help women at the Abbotsford Convent, most of whom were not residents because they were “fallen”, she explained, but for reasons including alcoholism, old age and destitution.</p>
<h2>Suffrage and leadership</h2>
<p>Hay Thomson helped found the <a href="https://www.australsalon.org/130th-anniversary-celebration-1">Austral Salon of Women, Literature and the Arts</a> in January 1890 and <a href="https://ncwvic.org.au/about-us.html#est">the National Council of Women of Victoria</a>. Both organisations are still celebrating and campaigning for women. </p>
<p>Throughout, she continued writing, becoming <a href="https://en.wikipedia.org/wiki/Table_Talk_(magazine)">Table Talk</a> magazine’s music and social critic. </p>
<p>In 1899 she became editor of The Sun: An Australian Journal for the Home and Society, which she bought with Evelyn Gough. Hay Thomson also gave a series of lectures titled <a href="https://trove.nla.gov.au/newspaper/article/145847122?searchTerm=%22catherine%20hay%20thomson%22%20and%20%22women%20in%20politics%22&searchLimits=">Women in Politics</a>. </p>
<p>A Melbourne hotel maintains that Hay Thomson’s private residence was secretly on the fourth floor of Collins Street’s <a href="https://www.melbourne.intercontinental.com/catherine-hay-thomson">Rialto building</a> around this time. </p>
<h2>Home and back</h2>
<p>After selling The Sun, Hay Thomson returned to her birth city, Glasgow, Scotland, and to a precarious freelance career for English magazines such as <a href="https://onlinebooks.library.upenn.edu/webbin/serial?id=cassellsmag">Cassell’s</a>. </p>
<p>Despite her own declining fortunes, she brought attention to writer and friend <a href="http://adb.anu.edu.au/biography/carmichael-grace-elizabeth-jennings-5507">Grace Jennings Carmichael</a>’s three young sons, who had been stranded in a Northampton poorhouse for six years following their mother’s death from pneumonia. After Hay Thomson’s article in The Argus, the Victorian government granted them free passage home.</p>
<p>Hay Thomson eschewed the conformity of marriage but <a href="https://trove.nla.gov.au/newspaper/article/65330270?searchTerm=&searchLimits=l-publictag=Mrs+T+F+Legge+%28nee+Hay+Thomson%29">tied the knot</a> back in Melbourne in 1918, aged 72. The wedding at the Women Writer’s Club to Thomas Floyd Legge, culminated “a romance of forty years ago”. <a href="https://trove.nla.gov.au/newspaper/article/140219851">Mrs Legge</a>, as she became, died in Cheltenham in 1928, only nine years later.</p><img src="https://counter.theconversation.com/content/129352/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>A passionate crusader for the rights of women and children, Catherine Hay Thomson went undercover to investigate their treatment in public institutions and testified before a Royal Commission.Kerrie Davies, Lecturer, School of the Arts & Media, UNSW SydneyWilla McDonald, Senior Lecturer, Macquarie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1216372019-08-14T05:07:59Z2019-08-14T05:07:59ZPatients have rights. Here’s how to use yours<figure><img src="https://images.theconversation.com/files/287949/original/file-20190814-136203-jkg1tg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">What rights do you have when discussing medical treatments or test results with your doctor?</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/professional-treatment-nice-smart-pleasant-man-750044245?src=7aaC6FBe4ldDNXdnqzhvig-1-24">from www.shutterstock.com</a></span></figcaption></figure><p>Working your way around the health-care system can be overwhelming. This is especially hard when care takes place in health systems <a href="https://theconversation.com/waiting-for-better-care-why-australias-hospitals-and-health-care-are-failing-104862">under stress</a>.</p>
<p>However as a patient, you have rights about how you’re treated. This includes not just your actual therapy, but how you’re spoken to, how your records are handled and even whether you wish to be treated at all.</p>
<p>Now, the Australian Commission on Safety and Quality in Health Care <a href="https://www.safetyandquality.gov.au/national-priorities/charter-of-healthcare-rights/review-of-the-charter-of-healthcare-rights-second-edition">has updated</a> its <a href="https://www.safetyandquality.gov.au/sites/default/files/2019-06/Charter%20of%20Healthcare%20Rights%20A4%20poster%20ACCESSIBLE%20pdf.pdf">charter of patient rights</a>.</p>
<p>The idea is to promote a more active role in health care for patients (and their carers) by reminding them of their seven rights: access to health care, safety, respect, partnership, information, privacy and giving feedback. </p>
<p>But what do these rights really mean when it comes to day-to-day issues you or your family might face with your GP, in hospital or in a nursing home?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-an-australian-charter-of-rights-is-a-matter-of-national-urgency-121411">Why an Australian charter of rights is a matter of national urgency</a>
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<h2>Example 1: leaving hospital early</h2>
<p>Imagine an elderly patient who has been hospitalised with an infection. After a couple of days of treatment, she <a href="https://jamanetwork.com/journals/jama/article-abstract/203118">wants to go home</a> to live alone. The patient’s doctors are worried she won’t be able to take care of herself and try to convince her to move into a rehabilitation facility. She refuses.</p>
<p><em>Respect</em> means the patient has the right to make her own choices, even if they could result in harm. But this doesn’t mean just abandoning the patient to her rights. A first step is the right to <em>information</em>, to ensure she understands the risks of going home. <em>Partnership</em> requires communication with the patient herself as well as other people she chooses, like family members and friends. This helps <a href="https://www.sciencedirect.com/science/article/pii/S0738399113004722">support the patient</a>.</p>
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<p>
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<strong>
Read more:
<a href="https://theconversation.com/hospital-discharges-to-no-fixed-address-heres-a-much-better-way-106602">Hospital discharges to ‘no fixed address’ – here's a much better way</a>
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<h2>Example 2: dementia restraints</h2>
<p><a href="https://www.aihw.gov.au/reports-data/health-conditions-disability-deaths/dementia/overview">More than half</a> of all people in permanent residential aged care have dementia. </p>
<p>Sometimes patients become physically aggressive, becoming a danger to themselves and others. Physical and chemical restraints for these people has been widespread, and is being considered by the <a href="https://agedcare.royalcommission.gov.au/Pages/Terms-of-reference.aspx">Royal Commission into Aged Care Quality and Safety</a>.</p>
<p>Restraints won’t be the right thing <a href="https://ama.com.au/position-statement/restraint-care-people-residential-aged-care-facilities-2015">in all cases</a>. Whether it’s right for a particular person requires balancing <em>respect</em> for the patient’s own views and dignity, with other people’s rights to <em>safety</em>. <em>Respect</em> can be facilitated by working in <em>partnership</em> with the patient and their family to identify safe options other than restraint.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/physical-restraint-doesnt-protect-patients-there-are-better-alternatives-111060">Physical restraint doesn't protect patients – there are better alternatives</a>
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</p>
<hr>
<h2>Example 3: health information disclosure</h2>
<p>Trips to the emergency department are often scary and sensitive. The visit can be even worse if you feel others can overhear your conversations with doctors or nurses.</p>
<p><a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1742-6723.2005.00702.x">More than one in ten</a> people who went to the emergency department of a major Melbourne hospital reported this experience. These people felt the loss of their <em>privacy</em>. It also might fail to show respect, dignity and consideration, as required in the right to <em>respect</em>.</p>
<p>But not every unwanted disclosure of health information will be wrong. Some might even be necessary to meet other health-care rights. </p>
<p>For instance, an emergency department with curtains instead of walled rooms to help people or equipment move more freely might meet the <em>safety</em> right even though it risks a patient’s right to <em>privacy</em>. But the charter at least means hospitals and treating teams have to justify any unwanted disclosure of health information. It also means patients who feel uncomfortable can <em>give feedback</em>, another of their rights.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/paper-tsunami-how-the-move-to-digital-medical-records-is-leaving-us-drowning-in-old-paper-files-119534">Paper tsunami: how the move to digital medical records is leaving us drowning in old paper files</a>
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</p>
<hr>
<h2>How does Australia stack up?</h2>
<p>Other countries have created similar lists of patients’ rights, including <a href="https://www.hdc.org.nz/your-rights/the-code-and-your-rights/">New Zealand</a> and <a href="https://www2.gov.scot/Resource/0039/00390989.pdf">Scotland</a>.</p>
<p>The most valuable part of the Australian charter is improving patient and carer understanding of existing health-care rights. This makes it easier to know when to complain to a state or territory <a href="https://www.ahpra.gov.au/Notifications/Further-information/Health-complaints-organisations.aspx">complaints commission</a>, or the <a href="https://www.ahpra.gov.au/Notifications/Raise-a-concern.aspx">Australian Health Practitioner Regulation Agency</a>.</p>
<p>Although the Australian Commission on Safety and Quality in Health Care is releasing <a href="https://www.safetyandquality.gov.au/our-work/partnering-consumers/australian-charter-healthcare-rights/supportive-resources-second-edition-charter">more resources</a> for patients, its charter may not go far enough in protecting groups who <a href="https://www.abc.net.au/news/2019-07-29/naomi-williams-tumut-sepsis-death-inquest-findings/11355244">experience systemic bias</a> in their health-care interactions. This includes many Aboriginal and Torres Strait Islander people.</p>
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<strong>
Read more:
<a href="https://theconversation.com/ms-dhu-coronial-findings-show-importance-of-teaching-doctors-and-nurses-about-unconscious-bias-60319">Ms Dhu coronial findings show importance of teaching doctors and nurses about unconscious bias</a>
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</p>
<hr>
<p>Another pitfall of the charter is its non-binding nature. It describes the rights patients should expect but it does little to enforce them. This can leave the charter as something of a toothless tiger, an issue also discussed <a href="http://www.cmaj.ca/content/182/13/E641.short">internationally</a>. </p>
<p>The charter also doesn’t deal with potential <a href="https://www.bmj.com/content/bmj/335/7631/1187.full.pdf">patient responsibilities</a>. These are the obligations consumers have for their own health, like treating staff considerately and keeping medical appointments. </p>
<p>It’s hard to see how one can exist without the other.</p><img src="https://counter.theconversation.com/content/121637/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lisa Eckstein is an investigator on two current Australian Research Council Discovery Program Grants - Genomic Data Sharing: Shaping an Optimal Regulatory Framework and Reforming the Regulatory Environment for Innovative Health Technologies: Identifying Congestion and Filling Gaps.</span></em></p><p class="fine-print"><em><span>Rebekah McWhirter is on the board of Women’s Health Tasmania and has been supported by NHMRC and ARC grants.</span></em></p>It’s all very well having rights. But what do these rights really mean when you’re with your GP, in hospital or in a nursing home?Lisa Eckstein, Senior Lecturer in Law and Medicine, University of TasmaniaRebekah McWhirter, Research Fellow, Centre for Law and Genetics, University of TasmaniaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/816002017-08-15T01:21:35Z2017-08-15T01:21:35ZThe hidden stories of medical experimentation on Caribbean slave plantations<figure><img src="https://images.theconversation.com/files/181467/original/file-20170808-16049-lyqrtj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">'The Plantation,' oil on wood, ca. 1825.</span> <span class="attribution"><a class="source" href="http://www.metmuseum.org/art/collection/search/12968">The Metropolitan Museum of Art</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>In the natural course of events, humans fall sick and die. Patients hope for miraculous remedies to restore their health.</p>
<p>We all want our medicines to work for us in wondrous ways. But how are human subjects chosen for experiments? Who bears the burden of risk? What ethical brakes keep scientific enthusiasm from overwhelming vulnerable populations? Who goes first?</p>
<p>Today, the question of underrepresented minorities in medical experimentation is still volatile. Minorities, especially African-Americans in the U.S., tend to be simultaneously underrepresented in medical research and historically <a href="https://global.oup.com/academic/product/the-oxford-textbook-of-clinical-research-ethics-9780195168655">exploited in experimentation</a>. </p>
<p>My new book, <a href="http://www.sup.org/books/title/?id=27600">“Secret Cures of Slaves: People, Plants, and Medicine in the Eighteenth-Century Atlantic</a>,” zeroes in on human experimentation on Caribbean slave plantations in the late 1700s. Were slaves on New World sugar plantations used as human guinea pigs in the same way African-Americans were in the American South centuries later? </p>
<h1>Exploitative experiments with slaves</h1>
<p>History is littered with exploitative experiments in humans. <a href="https://www.cdc.gov/tuskegee/timeline.htm">The Tuskegee syphilis experiment</a> is probably one of the most infamous. From 1932 to 1972, the U.S. Public Health Service offered 600 African-American men food, free medical care and burial insurance for participating in the study. About 400 of these poor Alabamans had syphilis. The government studied the natural progression of the disease until death, even though penicillin was an easy, cheap and safe cure.</p>
<p>This type of medical testing – empirical study through controlled trials – began in earnest in the late 1700s. Many poor souls were subjected to medical testing. In Europe and its American colonies, drug trials tended to overselect subjects from the poor and wards of the state, such as prisoners, hospital patients and orphans. Most <a href="http://www.brill.com/products/book/new-medical-challenges-during-scottish-enlightenment">experimental subjects</a> came from the same groups used for dissection – that is, persons with no next of kin to insist on burial rites or to pay for expensive cures. </p>
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<a href="https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=470&fit=crop&dpr=1 600w, https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=470&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=470&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=591&fit=crop&dpr=1 754w, https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=591&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/181554/original/file-20170809-23494-rf2q00.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=591&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A sugar mill circa 1660.</span>
<span class="attribution"><a class="source" href="https://archive.org/details/completehistoryo00pome">Getty Research Institute, Los Angeles (2882-111)</a></span>
</figcaption>
</figure>
<p>I was surprised to learn that, in many instances, doctors did not – as might be expected – use slaves as guinea pigs. Slaves were valuable property of powerful masters. The master’s will prevailed over a doctor’s advice. </p>
<p>A British physician in Jamaica reported he had developed a “perfect cure” for <a href="http://www.who.int/mediacentre/factsheets/fs316/en/">yaws</a>, a horrid tropical infection of the skin, bones and joints bred of poverty and poor sanitation. The experimental treatment was slated to take three or four months. The masters, not caring to “lose their Slaves’ labor” for so long, denied the doctor’s request. </p>
<p>However, numerous slaves were exploited in medical experiments at this time. <a href="https://www.ncbi.nlm.nih.gov/labs/articles/13352995/">John Quier</a>, a British doctor working in rural Jamaica, freely experimented with smallpox inoculation in a population of 850 slaves during the 1768 epidemic. Inoculation, a precursor to vaccine, involved inducing a light case of the disease in a healthy person in hopes of immunizing that person for life. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=456&fit=crop&dpr=1 600w, https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=456&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=456&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=573&fit=crop&dpr=1 754w, https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=573&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/181459/original/file-20170808-20582-18ehe88.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=573&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Lancet used to make small punctures – generally four or five – in the arm or leg for the purpose of inoculation.</span>
<span class="attribution"><span class="source">Wellcome Images (L0057752)</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Quier was employed by slave owners and would have inoculated plantation slaves for smallpox, with or without his scientific experiments. In all instances, masters had the final word. There was no issue of slave consent, or, for that matter, often physician consent. </p>
<p>But Quier did not simply inoculate to prevent disease. We see from his reports that he used slaves to explore questions that doctors in Europe dared not. He wanted to know, for example, whether one could safely inoculate menstruating or pregnant women. He also wanted to know if it was safe to inoculate newborn infants or a person already suffering from dropsy, yaws or fever and the like.</p>
<p>In his <a href="https://books.google.com/books?id=QdfmJtI8DkMC&dq=Letters+and+Essays+.+.+.+by+Different+Practitioners">letters to colleagues in London</a>, Quier reported that, to answer these questions, he sometimes inoculated repeatedly in the same person and at his own expense. Throughout his experiments, when pressed, Quier followed what he considered of interest to science – and not necessarily what was best for the human being standing in front of him.</p>
<h1>Gender and science</h1>
<p>The history of human experimentation is not merely about subjects used and misused, but also about subjects excluded from testing – and, as a consequence, from the potential benefits of a cure. </p>
<p>Today, medical researchers struggle to <a href="https://orwh.od.nih.gov/toolkit/recruitment/history.html">include women</a> in clinical trials. It’s impossible to say when women were defined out as proper subjects of human research. But women were regularly included in medical research in the 18th century. </p>
<p>In 1721, the iconic <a href="https://theconversation.com/judging-jenner-was-his-smallpox-experiment-really-unethical-54362">Newgate Prison trials</a> in England tested the safety and efficacy of smallpox inoculation. Of the elected six condemned criminals, there were three women and three men, matched as closely as possible for age. </p>
<p>Women also featured in Quier’s experiments, raising explosive questions about differences among women, many of which were about race. </p>
<p>For example, <a href="https://books.google.com/books?id=QdfmJtI8DkMC&dq=Letters+and+Essays+.+.+.+by+Different+Practitioners">his London colleagues</a> wondered whether his smallpox experiments done on “Negro women” were valid for English women. “Some gentlemen” in London were concerned that experiments done on slave women were not valid for “women of fashion, and of delicate constitutions.” Treatments appropriate for enslaved women, they warned, might well destroy ladies of “delicate habits, …educated in European luxury.” </p>
<h1>African contributions to science</h1>
<p>African, Amerindian and European knowledges mixed on Caribbean sugar plantations.</p>
<p>Europeans had little experience with the tropical disease they encountered in the Caribbean, but Africans did. One of my purposes in this book is to expand our knowledge of African contributions to science.</p>
<p>An extraordinary experiment in 1773 pitted purported slave cures against European treatments in Grenada, a small island south of Barbados. In something of a “cure-off,” a slave’s remedy for yaws was tested against the standard European remedy. Under the master’s careful eye, four slaves were treated by a European-trained surgeon, two by the slave doctor. </p>
<p>The surgeon employed a standard mercurial treatment, which, when taken over several years, tended to leave slaves’ health “broken.” Meanwhile, the slave set to work with methods learned in his “own Country” (presumably Africa). This consisted of sweating his patients “powerfully” twice a day in a cask with a small fire and by giving them a medicine made from two woods, known locally as “Bois Royale and Bois fer.”</p>
<p>The outcome? The slave’s patients were cured within a fortnight; the surgeon’s patients were not. The plantation owner, a man of science, consequently put the man of African origins in charge of all yaws patients in his plantation hospital. In the process, the enslaved man – who remained nameless and faceless throughout – was elevated in status to a “Negro Dr.”</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=415&fit=crop&dpr=1 600w, https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=415&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=415&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=522&fit=crop&dpr=1 754w, https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=522&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/181460/original/file-20170808-11420-7sx9q2.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=522&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">African, Amerindian and European knowledges mixed on Caribbean sugar plantations.</span>
<span class="attribution"><span class="source">Londa Schiebinger and Erik Steiner.</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>The Atlantic world represents a step in globalization, the potential enrichment of the human experience when worlds collide. But the extinction of peoples, such as the Amerindians in the Greater Antilles, coupled with the fear and secrecy bred in the enslavement of Africans, meant that knowledge did not circulate freely. Amerindians and enslaved Africans strategically held many secrets. Though hidden or suppressed, much of this knowledge can still be found today in local Caribbean remedies. </p>
<p><a href="https://books.google.com/books/about/M%C3%A9moires_pour_servir_%C3%A0_l_histoire_de_C.html?id=FSkkMwEACAAJ">Bertrand Bajon</a>, a French physician working in Cayenne, envied the “numerous plant cures” known to “Indians and Negroes.” Bajon pleaded that “for the good of humanity” slaves be obliged to “communicate the plants he [or she] used and the manner in which they are employed.” In return, Bajon recommended the slave be offered freedom – but not until “a great number of experiments confirmed the cure’s virtue.” </p>
<p>We must remember that knowledge created in this period did not respond to science for its own sake, but was fired in the colonial crucible of conquest, slavery and violence.</p><img src="https://counter.theconversation.com/content/81600/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Londa Schiebinger receives funding from the National Science Foundation; National Library of Medicine</span></em></p>Slaves were involved in medical experimentation in the 1700s – both as sources of knowledge and as nonconsenting participants.Londa Schiebinger, Professor of History of Science, Stanford UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/789712017-06-29T23:50:33Z2017-06-29T23:50:33ZWhy market competition has not brought down health care costs<figure><img src="https://images.theconversation.com/files/176312/original/file-20170629-11567-1rf25h9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Decreased regulation has failed to reduce the growing administrative burden of health care. </span> <span class="attribution"><span class="source">Valeri Potapova/Shutterstock.com</span></span></figcaption></figure><p>It is easier than ever to buy stuff. You can purchase almost anything on Amazon <a href="https://www.amazon.com/gp/help/customer/display.html?nodeId=468480">with a click</a>, and it is only slightly harder to find a place to stay in a foreign city on Airbnb. </p>
<p>So why can’t we pay for health care the same way? </p>
<p><a href="http://www.pnhp.org/sites/default/files/docs/2012/Dollars%20and%20Sense.pdf">My research into the economics of health care</a> suggests we should be able to do just that, but only if we say goodbye to our current system of private insurance – and the heavy administrative burden that goes along with it. <a href="https://theconversation.com/republican-health-care-bills-defy-the-partys-own-ideology-80175">Republican efforts</a> to repeal the <a href="https://theconversation.com/us/topics/affordable-care-act-13354">Affordable Care Act</a> (ACA) would take us in the wrong direction. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/176314/original/file-20170629-5317-1vbuf4y.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">Senate Majority Leader Mitch McConnell, middle, on June 27 announced he was delaying a vote on the Republican health care bill.</span>
<span class="attribution"><span class="source">AP Photo/Andrew Harnik</span></span>
</figcaption>
</figure>
<h2>What makes health care so complicated</h2>
<p>In a way, the reason buying health care is different than shopping for a garden gnome or short-term apartment seems obvious. Picking the right doctor, for example, involves a lot more <a href="https://web.stanford.edu/%7Ejay/health_class/Readings/Lecture01/arrow.pdf">anxiety and uncertainty</a> and concerns matters of life and death. </p>
<p>But that’s not really the reason we can’t purchase health care the same way we <a href="http://www.cnn.com/2017/03/07/politics/jason-chaffetz-health-care-iphones/">buy an iPhone</a>. In 1969, this would almost be true (for a rotary phone anyway). Back then, the bill for a birth in a New Jersey hospital <a href="http://www.latimes.com/business/la-fi-healthcare-watch-bills-20150323-story.html">looked a lot like the receipt</a> you’d get for buying pretty much anything else: customer name, amount and a box to be checked for payment by check, charge or money order. </p>
<p>Today, paying for even the simplest office visit <a href="https://www.uta.edu/faculty/story/2311/Misc/2013,2,26,MedicalCostsDemandAndGreed.pdf">can become a nightmare</a>, requiring insurance preauthorization, reimbursements adjusted for in-network or out-of-network copays and deductibles and the physician “tier” (or how your prospective doctor is evaluated for cost and quality by the insurance company). </p>
<p>Prescriptions require even more authorizations, while follow-up care necessitates coordinated review – and it goes without saying that many forms will have to be completed. And this doesn’t end when you arrive at the doctor’s office. A large chunk of any visit is spent with a beleaguered nurse, or even the physician, filling out a required checklist of insurance-mandated questions.</p>
<p>The growing complexity of health care finance explains why it’s becoming more and more expensive even though there has been <a href="http://www.nejm.org/doi/full/10.1056/NEJMp0910064#t=article">little or no improvement in quality</a>. Since 1971, the share of our national income spent on health care <a href="https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NationalHealthAccountsProjected.html">has doubled</a>.</p>
<p>We can blame a significant part of the soaring cost of health care on the ever-increasing burden of administrative complexity, whose cost <a href="https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NationalHealthAccountsHistorical.html">has climbed at a pace of more than 10 percent a year</a> since 1971 and now consumes over 4 percent of GDP, up from less than 1 percent back then. </p>
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<h2>Lemons and cherries</h2>
<p>So if the rising cost of administration is a primary force driving health care inflation, why don’t we do something about it? </p>
<p>That’s because administrative complexity and waste are no accident but rather are baked into our private health insurance system and made worse by continuing attempts to use competitive market processes to achieve social ends other than maximizing profit. </p>
<p>Paying a doctor was relatively simple in the 1960s. <a href="https://books.google.com/books/about/The_Blues.html?id=LGE7OAAACAAJ">Most people had the same insurance policy</a>, issued by Blue Cross and Blue Shield, which back then was a private company but operated like a non-profit under strict regulation.</p>
<p>But in hopes of controlling steadily rising costs, policymakers encouraged insurers besides Blue Cross to enter health insurance markets, beginning with the <a href="https://healthcare.uslegal.com/managed-care-and-hmos/the-hmo-act-of-1973/">HMO Act of 1973</a>. The proliferation of for-profit companies with competing plans raised billing costs for health care providers, which now had to submit claims to a multitude of different insurers, each with its own codes, forms and regulations. </p>
<p>Not only that, but insurers quickly <a href="https://meps.ahrq.gov/data_files/publications/st497/stat497.pdf">discovered the dirty secret of health care finance</a>: Sick people are expensive and make up most costs, while healthy people are profitable. </p>
<p>In other words, the vital lesson for an insurer looking to make money is to identify the few sick people and get them to go away (“<a href="http://frugalfamilydoctor.blogspot.com/2013/06/cherry-picking-and-lemon-dropping.html">lemon dropping</a>”) and find the healthy majority and do things that attract them to your plan (“<a href="https://clearhealthcosts.com/blog/2016/11/doctors-point-view-payments-cherry-picking-lemon-dropping/">cherry picking</a>”). </p>
<p>Insurers are happy to offer discounts on <a href="http://www.aetna.com/employer/commMaterials/documents/Roadmap_to_Wellness/fitness-reimbursement-member-postenroll-flyer-hcr.PDF">fitness club memberships</a> to attract healthy people, for example. But they punish the sick with <a href="http://www.kff.org/health-costs/press-release/average-annual-workplace-family-health-premiums-rise-modest-3-to-18142-in-2016-more-workers-enroll-in-high-deductible-plans-with-savings-option-over-past-two-years/">higher copays and deductibles</a>, as well as increasingly restrictive and intrusive regulations on preauthorization.</p>
<p><a href="http://www.nber.org/papers/w6107">Economists call it adverse selection</a>. Regular people call it paperwork hell. Whatever the name, it’s the purpose of increasingly complicated insurance plans and reimbursement forms.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/176315/original/file-20170629-2996-1mhmzw3.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">Insurers use ‘lemon dropping’ and ‘cherry picking’ to control costs.</span>
<span class="attribution"><span class="source">uoucheg/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>A failure to fix</h2>
<p>The public and government authorities figured this out quickly, but too often the cures have been as bad as the disease. </p>
<p>We could, and I believe should, have abandoned the use of for-profit private insurance to adopt a <a href="http://www.pnhp.org/facts/what-is-single-payer">simple single-payer system</a>, in which a government agency would provide coverage to everyone in the U.S. Instead, in forging the ACA and in every other health reform enacted in the past 40 years, <a href="http://www.nytimes.com/2010/03/21/health/policy/21health.html?mcubz=0">policymakers decided to work with private insurance</a> while trying to fix some of its evils. </p>
<p>We <a href="https://archive.hhs.gov/news/press/1999pres/990412.html">adopted the “Patient’s Bill of Rights”</a> around the turn of the century and created processes to allow patients and providers to appeal medical decisions made by insurers. State health commissioners now have considerable power to supervise insurers, while the ACA <a href="https://www.healthcare.gov/glossary/essential-health-benefits/">mandates certain essential benefits</a> be provided in all insurance plans.</p>
<p>Yet each of these efforts to protect the sick from abuses inherent in the for-profit insurance system only added to the administrative burden, and the costs, on the entire industry. </p>
<p>Some perceived the problem as a lack of market competition so <a href="http://content.healthaffairs.org/content/16/1/142.abstract">governments freed hospitals</a> and other health care providers from regulations on prices and restrictions on mergers, advertising and other practices. Far from reducing administrative complexity or lowering prices, research has shown that <a href="http://www.sciencedirect.com/science/article/pii/S0148296301003095">deregulation made both problems worse</a> by allowing the formation of networks of hospitals and providers who use advertising and other business and financial practices to control markets and stifle competition.</p>
<p>Simply put, each attempt to fix a <a href="http://www.sciencedirect.com/science/article/pii/S0148296301003095">problem</a> has led to more administration because we have kept intact the system of private health insurance – and for-profit medicine – that is <a href="https://www.bostonglobe.com/opinion/2012/06/21/years-later-weld-deregulation-hospital-rates-looms-large-root-today-cost-crisis-weld-action-root-health-care-cost-crisis/x8RD0if5Mhgoooq5A4ZYmK/story.html">at the root of at the dual problems of rising health care costs</a> and <a href="http://www.fiercehealthcare.com/finance/place-blame-for-high-hospital-prices-squarely-deregulation">growing complexity</a>. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=412&fit=crop&dpr=1 600w, https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=412&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=412&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=517&fit=crop&dpr=1 754w, https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=517&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/176313/original/file-20170629-11661-398jad.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=517&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A growing share of Americans support switching to a single-payer health care system.</span>
<span class="attribution"><span class="source">AP Photo/Rich Pedroncelli</span></span>
</figcaption>
</figure>
<h2>It’s time to take a step back</h2>
<p>Clearly, our experiment in market-driven health care has gone awry. </p>
<p>Before we introduced competition and deregulation into health care, things were relatively simple, with <a>most revenue going to providers</a>. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024588/">We could save a lot of money</a> if we went backwards and adopted a single-payer system like Canada’s, where insurers do not engage in systematic preauthorization or utilization review and hospitals and pharmaceutical companies do not form monopolies to profit at the expense of the public. </p>
<p>Largely by reducing administrative costs within the insurance industry and to providers, a single-payer program could save enough money to <a href="http://www.pnhp.org/sites/default/files/Funding%20HR%20676_Friedman_7.31.13_proofed.pdf">provide health care to all Americans</a>.</p>
<p>Compared with Canada’s single payer system, American doctors and hospitals <a href="http://www.nejm.org/doi/full/10.1056/NEJMsa022033#t=article">have nearly twice as many administrative staff workers</a>. </p>
<p>So whether the ACA remains in force or it’s replaced by something else, I believe we won’t be able to control health costs – and make health care affordable for all Americans – until we revamp the system with <a href="http://time.com/money/4733018/what-is-single-payer-healthcare-system/">something like single payer</a>.</p><img src="https://counter.theconversation.com/content/78971/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gerald Friedman belongs to the Massachusetts Society of Professors (a National Education Association affiliate) and Democratic Socialists of America. He has done some consulting work for the Vermont State Employees and has written reports on single-payer plans for several states, including Maryland, Pennsylvania and New York. </span></em></p>GOP lawmakers say their bills to replace the Affordable Care Act would do a better job than the ACA of controlling rising health care costs, but 40 years of deregulation show it just won’t work.Gerald Friedman, Professor of Economics, UMass AmherstLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/671132016-12-19T02:22:31Z2016-12-19T02:22:31ZObama administration’s big science and tech innovation: Socially engaged policy<figure><img src="https://images.theconversation.com/files/150616/original/image-20161218-26137-6n65ta.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Obama annually welcomed students to the White House with their Science Fair projects.</span> <span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Obama-Science/cdaa4cbaea9e4d03b9c54f898d9da404/2/0">AP Photo/Susan Walsh</a></span></figcaption></figure><p>When President Barack Obama gave his <a href="https://www.whitehouse.gov/blog/2009/01/21/president-barack-obamas-inaugural-address">inaugural address</a> in 2009, he promised to “restore science to its rightful place and wield technology’s wonders to raise health care’s quality and lower its cost.” For the previous eight years, scientists had protested that the Bush administration <a href="http://www.washingtonpost.com/wp-dyn/content/article/2005/08/31/AR2005083101271.html">ignored</a> their expertise and <a href="http://www.livescience.com/9574-scientists-bush-stifles-science-lets-global-leadership-slip.html">restricted</a> research freedoms. So they were heartened when the new president <a href="https://www.whitehouse.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells">removed barriers</a> to federal funding for human embryonic stem cell research and <a href="https://www.whitehouse.gov/the-record/climate">took serious steps</a> to mitigate climate change. </p>
<p>But President Obama should be remembered – and praised – for much more than his renewed support for science. As a scholar of science and technology policy, it is clear to me that this president and his advisers recognized that policy could be carefully crafted to maximize the social and economic benefits of research and innovation. </p>
<p>They designed intellectual property policies, for example, that enhance scientific collaboration and in turn accelerate research progress, and also improve the availability of important technologies. And by including average citizens in developing research projects and priorities, they increased the usefulness and public legitimacy of science and technology. </p>
<h2>Modernizing patents’ power</h2>
<p>For decades, the United States government had <a href="http://www.press.uchicago.edu/ucp/books/book/chicago/P/bo25338584.html">largely accepted</a> the idea that patents were a necessary incentive for innovation. With the promise of a temporary monopoly if they were successful, inventors would work hard to develop new, transformative technologies. The potential benefits were significant: access to technologies that could transform societies for the better. Ultimately new industries, new jobs and economic growth would result.</p>
<p>Over time, though, it became clear that patents can <a href="http://science.sciencemag.org/content/280/5364/698">stifle research</a> and make important new technologies <a href="https://mitpress.mit.edu/books/building-genetic-medicine">prohibitively expensive</a>. The Patent and Trademark Office (PTO) and its traditional stakeholders, such as patent lawyers, <a href="https://www.uspto.gov/web/offices/com/sol/comments/utilguide/index.html">dismissed</a> such problems as minor and temporary, suggesting that only those who misunderstood how the system worked were concerned.</p>
<p>But in 2010, the Obama administration took the unprecedented step of breaking with its own PTO to side with physicians and scientists, as well as civil liberties and patient advocacy groups, who raised these issues in the context of patents covering human genes. A case brought in federal courts focused on whether genes were products of nature, but the plaintiffs <a href="https://www.aclu.org/legal-document/brca-complaint">were clearly motivated</a> by concerns that patents on human genes were stifling important research and limiting access to potentially lifesaving genetic testing.</p>
<p>The Obama administration argued alongside these plaintiffs publicly when the Supreme Court heard the case in 2013. And in a unanimous decision, the Supreme Court agreed with the plaintiffs and the administration. Today, isolated human genes are not patentable. </p>
<p>As a result, there is greater competition in the genetic testing market; more tests are <a href="http://www.nytimes.com/2015/04/21/business/more-accurate-affordable-tests-for-detecting-breast-cancer-genes.html?_r=0">available</a> for common diseases including breast cancer, and at lower costs.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=411&fit=crop&dpr=1 600w, https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=411&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=411&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=517&fit=crop&dpr=1 754w, https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=517&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/150617/original/image-20161218-28140-gfw353.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=517&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Announcing the Precision Medicine Initiative, Obama shares the podium with a model of DNA.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Obama-Budget-Precision-Medicine/d3d0e8db587843fb82f29d2fcab56563/11/0">AP Photo/Carolyn Kaster</a></span>
</figcaption>
</figure>
<h2>Removing IP roadblocks</h2>
<p>The Obama administration’s concern that intellectual property could be hurting biomedicine and ultimately patients is also clear in the research programs it established.</p>
<p>Both the <a href="https://www.whitehouse.gov/share/brain-initiative">Brain Initiative</a>, designed to develop a more dynamic understanding of brain function, and the <a href="https://www.whitehouse.gov/precision-medicine">Precision Medicine Initiative</a>, focused on designing individually tailored treatment and prevention strategies, <a href="https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative">emphasize</a> data sharing and collaboration. While previous efforts viewed competition among individuals and proprietary interests as central to the development of biomedicine, the Obama administration has come to see these as potential obstacles. </p>
<p>This <a href="https://medium.com/cancer-moonshot/report-of-the-cancer-moonshot-task-force-executive-summary-e711f1845ec#.xc01cmmi8">skepticism</a> is perhaps clearest in the 2016 <a href="https://www.whitehouse.gov/CancerMoonshot">Cancer Moonshot</a> initiative. </p>
<p>Decades of significant government expenditures for cancer research – from President Nixon’s <a href="https://dtp.cancer.gov/timeline/flash/milestones/M4_Nixon.htm">War on Cancer</a> to an <a href="http://www.healthline.com/health/breast-cancer/state-of-awareness-and-research#3">over 2,000 percent increase</a> in yearly breast cancer research funding since the 1980s – have improved scientists’ understanding of the disease and reduced <a href="http://onlinelibrary.wiley.com/doi/10.3322/caac.21254/full">cancer deaths</a>. But cancer incidence <a href="http://onlinelibrary.wiley.com/doi/10.3322/caac.21254/full">remains high</a>, and there are still significant disparities in <a href="http://link.springer.com/article/10.1007/s10903-014-9991-0">diagnosis</a> and <a href="http://jnci.oxfordjournals.org/content/94/5/334.short">treatment.</a> </p>
<p>The Cancer Moonshot aims to address these problems through increased data sharing. </p>
<p>For example, it includes a first-of-its-kind, open access, public data platform, the <a href="https://www.whitehouse.gov/the-press-office/2016/06/06/fact-sheet-vice-president-biden-launches-open-access-data-resource-part">Genomic Data Commons</a>. This allows researchers not just to store and analyze the genomes of cancer tumors, linking that information to data about how the disease appears and spreads in the body, but also to share all of this information with colleagues. The platform also provides privacy and security protections for patients and researchers. </p>
<p>Before 2008, policymakers seemed to assume that the competitive ethos and monopoly incentives provoked by patent policies were the most likely to stimulate important scientific research. But the Obama administration’s nuanced approach to patents and investment in data-sharing initiatives have created a legacy that emphasizes openness and collaboration as the best avenue for producing scientific progress.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=394&fit=crop&dpr=1 600w, https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=394&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=394&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=495&fit=crop&dpr=1 754w, https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=495&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/150618/original/image-20161218-26089-1ympjzi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=495&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Protocols for patient consent were ripe for an update.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Informing-Patients/e6d3408332164573b4969bdafc0abe7d/8/0">AP Photo/Brian Kersey</a></span>
</figcaption>
</figure>
<h2>More voices in the research conversation</h2>
<p>The Obama administration also took important steps toward including citizen perspectives in science and technology development.</p>
<p>The Precision Medicine Initiative – which aims to gather data (genomic, medical, metabolic, microbial, environmental and lifestyle) from at least one million Americans to produce better medical diagnostics and therapies – emphasizes transparency, citizen representation and patient autonomy in its core principles. It is dedicated to keeping participants informed throughout the research process, and emphasizes the importance of culturally appropriate interactions.</p>
<p>It has created <a href="https://www.nih.gov/precision-medicine-initiative-cohort-program/infographics">a new model of research</a> that treats informed consent as ongoing and interactive, and gives research subjects the option to withdraw at any time.</p>
<p><a href="http://www.nature.com.proxy.lib.umich.edu/nature/journal/v478/n7369/full/478312a.html">Customarily</a>, participants in similar research projects provide consent only once, at the beginning. This traditional approach has become controversial in recent years because blood and tissue samples are often <a href="https://theconversation.com/if-we-dont-own-our-genes-what-protects-study-subjects-in-genetic-research-56003">used for a variety of projects</a>, and citizens <a href="http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all&_r=0">want more control</a> over how their samples are used. </p>
<p>The PMI also includes “<a href="https://www.whitehouse.gov/precision-medicine">substantial participant representation</a>” in all aspects of the process, including program design and implementation. This means research subjects will serve on the policy committees that develop data-sharing, privacy and recruitment guidelines, among others, and also help to determine research priorities. Previous scientific research initiatives have <a href="http://www.lancaster.ac.uk/fss/journals/gsp/docs/volume1number3/mlgspvol1no32005.pdf">included</a> citizen perspectives occasionally in the research process, either in funding decisions or identifying overarching goals. But the PMI approach is more ambitious and systematic. </p>
<p>The Obama administration’s enthusiasm for considering citizen perspectives is not limited to scientific research. We’ve seen this approach in its energy policy as well, including in decisions on the <a href="http://america.aljazeera.com/articles/2015/2/9/how-climate-activists-turned-a-pipeline-into-a-green-movement.html">Keystone XL</a> and <a href="http://www.latimes.com/nation/la-na-dakota-access-deadline-20161204-story.html">Dakota Access</a> pipeline.</p>
<p>After massive protests and millions of citizens <a href="https://www.youtube.com/watch?v=0BdjszfbIDw#t=19">submitting</a> public comments, President Obama <a href="https://www.nytimes.com/video/multimedia/100000004023322/obama-rejects-keystone-pipeline.html">rejected</a> the Keystone XL. Similarly, months of protests in Standing Rock, North Dakota, led the Army Corps of Engineers to halt development of the Dakota Access pipeline and <a href="https://www.theatlantic.com/science/archive/2016/12/the-historic-victory-at-standing-rock/509558/">request an environmental impact statement</a> that would assess the environmental and social implications of the project and provide extensive additional opportunity for public input. </p>
<p>At this moment, when there is great concern that the priorities of scientists and engineers do not align with those of the public, and there is growing <a href="https://www.bostonglobe.com/metro/2016/10/09/the-rise-biorights-donors-are-demanding-control-and-sometimes-cash-exchange-for-genetic-samples/jCbaQ2E5t6c0Qs1kcITMRM/story.html">desire</a> among citizens to be treated as “partners” rather than “subjects” in research, these kinds of initiatives are particularly important. They can lead to the development of science and technology that is more directly beneficial to the population – and also enhance the legitimacy of scientific and technological establishment.</p>
<h2>Will Trump build on the groundwork laid by Obama?</h2>
<p>There is a great deal of <a href="http://www.nature.com/news/the-ultimate-experiment-how-trump-will-handle-science-1.20971">uncertainty</a> about President-elect Trump’s approach to science and technology policy, and so far his cabinet appointments <a href="http://www.freep.com/story/opinion/columnists/stephen-henderson/2016/12/10/betsy-devos-trouble-data/95207844/">do not provide</a> much reassurance to the scientific community. Some of these appointments have <a href="http://www.newyorker.com/tech/elements/donald-trumps-war-on-science">even explicitly denied</a> the scientific consensus on climate change.</p>
<p>But there is a path forward that could allow Trump to remain true to those who voted him into office while building upon President Obama’s approach. Pundits tell us Trump’s victory is largely the <a href="https://www.washingtonpost.com/politics/a-rancorous-campaign-begets-huge-problems-for-the-winner/2016/11/08/0fcea580-a20d-11e6-8d63-3e0a660f1f04_story.html?utm_term=.0b0d12e81ec4">result</a> of a populist wave and deep frustration toward elites; many Americans feel that policymakers do not adequately consider the realities of their everyday lives.</p>
<p>President-elect Trump could address these concerns by bringing the needs and perspectives of rural and working-class Americans explicitly into the development of science and technology policies. His administration could consider <a href="http://delinkage.org/">new kinds of policy frameworks</a>, including intellectual property regimes, that could help to lower drug prices. It could bring these “forgotten” Americans directly into policy discussions about how to tackle the unemployment triggered by <a href="http://www.businessinsider.com/united-tech-ceo-says-trump-deal-will-lead-to-more-automation-fewer-jobs-2016-12">increasing automation</a>. And it could <a href="http://www.bmj.com/content/316/7129/463?variant=full-text">include them</a> in discussions about biomedical research priorities, perhaps leading to increased funding for practical solutions to the <a href="http://aese.psu.edu/directory/smm67/Election16.pdf">opioid epidemic</a>. </p>
<p>Such efforts could ultimately strengthen the legitimacy of the new administration among both the scientific community and the public, while continuing the work towards a socially engaged science and technology policy.</p><img src="https://counter.theconversation.com/content/67113/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Shobita Parthasarathy sits on the Board of Directors for Breast Cancer Action, a health justice advocacy group.</span></em></p>The outgoing president leaves behind some solid accomplishments in the world of science, tech and medicine. But the biggest departure from his predecessors might have been in his approach.Shobita Parthasarathy, Associate Professor of Public Policy and Women's Studies, University of MichiganLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/398952015-04-15T15:55:31Z2015-04-15T15:55:31ZShould airline pilots have less medical privacy?<figure><img src="https://images.theconversation.com/files/77921/original/image-20150414-24658-1s6zccm.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Frank and open discussions. </span> <span class="attribution"><span class="source">Appointment by Shutterstock</span></span></figcaption></figure><p>Since it was revealed that Andreas Lubitz – the co-pilot who purposefully crashed Germanwings Flight 9525, killing 150 people – had been treated for psychiatric illness, a debate has ensued over whether privacy laws regarding medical records should be less strict when it comes to professions that carry special responsibilities.</p>
<p>It has been widely argued that Germany’s privacy laws were to blame for the tragedy. The Times, for example, <a href="http://www.thetimes.co.uk/tto/news/world/europe/article4397392.ece">headlined an article</a>: “German obsession with privacy let killer pilot fly.” Similarly, another article <a href="http://time.com/3761895/germanwings-privacy-law/">published in TIME</a> said: “German privacy laws let pilot ‘hide’ his illness from employers.” </p>
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<img alt="" src="https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/77919/original/image-20150414-24654-q4syup.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">
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<span class="caption">Medical records.</span>
<span class="attribution"><span class="source">Record by Shutterstock</span></span>
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</figure>
<p>While Dirk Fischer, German lawmaker and the transport spokesman for the Christian Democratic Union (CDU), <a href="http://www.nbcnews.com/storyline/german-plane-crash/germanwings-crash-should-pilots-surrender-medical-records-n333776">called for</a> airlines to have mandatory access to pilots’ medical records, Frank Ulrich Montgomery, president of the German Medical Association (BÄK), disagreed. Montgomery <a href="http://www.theguardian.com/world/2015/mar/31/germanwings-plane-crash-insurers-compensation-costs-200m">believes</a> that current laws are appropriate, since aviation doctors are already relieved of their duties of confidentiality if they think a pilot could put other people’s lives at risk. If Lubitz’s doctor did not alert Germanwings, it must have been because Lubitz did not seem like a threat.</p>
<h2>Confidentiality and trust</h2>
<p>There are two arguments for why Lubitz’s doctor did the right thing by not disclosing Lubitz’s depression to his employer. First, functional doctor-patient relationships depend on trust. If confidentiality between patients and doctors is breached, patients will no longer trust their doctors. And a lack of trust will lead (at least some) patients to hide some of their symptoms or refrain from seeking medical attention altogether for fear of bad consequences, such as stigmatisation and work-related penalties. </p>
<p>More dangerous than a pilot with a mental illness – or any number of other professions that carry the responsibility of a great many lives – is that one with a mental illness who will not seek treatment because he does not trust his doctor.</p>
<p>For these reasons, philosopher Kenneth Kipnis goes even further. <a href="http://www.tandfonline.com/doi/full/10.1080/15265160500506308#abstract">He argues</a> that confidentiality should be “far closer to an absolute obligation that it has generally taken to be” and that doctors should honour confidentiality even in cases where the patient might harm a third party. If patients come to doctors for help, doctors have a chance at avoiding a possible catastrophe. If patients lose trust on doctors and do not ask for help, nothing will be gained – patients will remain afflicted by their illnesses and people who might be put at risk by patients will remain at risk. </p>
<p>In the days before the crash, Lubitz <a href="http://www.theguardian.com/world/2015/apr/02/germanwings-crash-second-black-box-found">searched</a> online both for medical treatments and for ways to commit suicide, which suggests he was undecided as to what to do. So another way of thinking about his scenario is that perhaps if he had trusted his doctor even more – and shared with him or her the way in which he was thinking of committing suicide – his doctor could have done more to help him and to protect the passengers of the aircraft he piloted.</p>
<h2>What is relevant to reveal?</h2>
<p>Lubitz’s doctor also did the right thing by not revealing his depression to Germanwings because his depression was far from obviously related to his crime. Simon Wessely, the president of the Royal College of Psychiatrists and an adviser to the British army, <a href="http://www.theguardian.com/world/2015/mar/28/germanwings-plane-crash-alps-depression-doctor">said</a> that “there isn’t a link between depression and aggressive suicide”. Jürgen Margraf, psychologist and professor at Bochum University, likewise <a href="http://www.nbcnews.com/storyline/german-plane-crash/germanwings-crash-should-pilots-surrender-medical-records-n333776">told</a> NBC News that, given the sheer weight of numbers involved, you are far less likely to be harmed by a person with depression than by a person without depression: “The chances of killing others are higher for non-depressed than for depressed people,” he said.</p>
<p>Furthermore, given the lack of relationship between depression and the pilot’s crime, it was not obviously in the public’s interest to know about Lubitz’s depression and morally questionable that his medical history of depression has been exposed so freely. In Germany, medical confidentiality is supposed <a href="http://www.wsj.com/articles/after-germanwings-crash-some-call-for-measured-response-to-medical-confidentiality-rules-1427818552">to be valid after death</a>. Publicly disclosing Lubitz’s ailment harms the public trust in doctor-patient confidentiality after death – and it may stigmatise people who are suffering from depression but who would never hurt anyone (but themselves).</p>
<p>The avoidable deaths of 150 people is a calamity and it makes sense to have a public debate about how to prevent future similar events from happening. Luckily, breaching confidentiality and endangering relationships between patients and doctors is not the only answer. </p>
<p>Along with the crucially important rule of having two people in the cockpit at all times (which violates nobody’s privacy), one medical measure to avoid future catastrophes is to notify employers of stay-home orders from doctors for employees who have high-responsibility jobs without mentioning the cause of the incapacitation. Lubitz reportedly had a sick note for the day he flew but never told the airline. If they had been aware of the sick note things might have been different.</p><img src="https://counter.theconversation.com/content/39895/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Carissa Véliz is affiliated with the Oxford Uehiro Centre for Practical Ethics.</span></em></p>Doctor sick notes could be disclosed to employers without endangering confidentiality.Carissa Véliz, DPhil Student in Philosophy, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/396042015-04-10T05:24:44Z2015-04-10T05:24:44ZDoctors can’t pick and choose which risks we should be told about<figure><img src="https://images.theconversation.com/files/77498/original/image-20150409-15225-2wwc1z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The doctor will see you now.</span> <span class="attribution"><span class="source">Doctor by Shutterstock</span></span></figcaption></figure><p>Patients are increasingly aware that medical choices are limited despite the plethora of information available that ought to inform our consent. This plays out most starkly in issues of organ donation and allocation. But when it comes to decision-making, the issue of what we should and shouldn’t be told has also been playing out in the courts. </p>
<p>In <a href="https://theconversation.com/court-decision-on-consent-must-put-the-onus-on-doctors-to-fully-disclose-risks-35778">a recent article</a> I discussed <a href="https://www.supremecourt.uk/decided-cases/docs/UKSC_2013_0136_PressSummary.pdf">Montgomery (AP) v Lanarkshire Health Board</a> – a case brought before the Supreme Court by a mother who contended that her obstetrician was legally negligent in failing to warn of risks related to her pregnancy. </p>
<p>While the General Medical Council (GMC) <a href="http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp">provides guidance on consent</a> for the medical profession, the test for negligent non-disclosure of risk at the time of Montgomery’s appeal was based on another case from some 30 years earlier: Sidaway v Bethlem Royal Hospital Governors. This case established that while medical professionals have a duty to give patients enough information to help them come to a decision, it is not necessary to warn them of every risk. </p>
<p>The Supreme Court unanimously allowed Montgomery’s appeal. She is now expected <a href="http://www.bbc.co.uk/news/uk-scotland-glasgow-west-31831591">to receive around £5m in damages</a>. The outcome of the case finally heralds a more patient-focused law of consent and it was noted by Judge Hale that Montgomery had provided the court with the opportunity to confirm the “confident statement” that the need for informed consent is part of English and Scottish law. Two other judges sitting on the Montgomery case found: </p>
<blockquote>
<p>The paradigm of the doctor-patient relationship implicit in the speeches in that [Sidaway] case has ceased to reflect reality. It would be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent on information from doctors.</p>
</blockquote>
<p>The law should now be aligned to how most of us likely see the idea of consent. That is whether the medical professional has enabled us, the patients, to make a meaningful choice about a medical procedure. And respect for patient autonomy in the law is vital. It highlights the need to strike the right balance between placing trust in the medical profession (as the judiciary should) and recognising a patient’s right to make a substantially informed and voluntary decision about matters that most immediately and personally affect them. </p>
<h2>Ideal autonomy versus reality</h2>
<p>When we normally think of consent it is a one-off event: the doctor gives the information and the patient is attentive, ready to ask questions, and quickly and comprehensively grasps the implications of a proposed course of treatment. This would be ideal and something to aspire towards, but the reality is different. </p>
<p>The GMC recognises that consent is a process – decisions are made by medical professionals and patients in an ongoing partnership. But this partnership is potentially hindered by numerous complexities. This may involve issues of how capable a patient is in making an autonomous choice – whether they fully grasp the information being given – and problems of false belief, or mere non-acceptance of information. Patients might simply be afraid to hear the full truth.</p>
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<img alt="" src="https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/77504/original/image-20150409-15240-1wky0iu.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">
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<span class="caption">Not just up to the law.</span>
<span class="attribution"><span class="source">Judge by Shutterstock</span></span>
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</figure>
<p>So, it’s all well and good promoting the principle of respect for autonomy in the law. But that, by itself, is nowhere near sufficient. If patients are really going to make the most of the refocusing of the medical professional’s legal standard of care, then we too must bring something to the patient-professional relationship. Greater attention must be paid to the potential complications above, by medical professionals and patients alike.</p>
<h2>Technology, time and space</h2>
<p>As a result of Montgomery, patients should now be more informed than ever. But more information does not equal more understanding and ultimately more autonomy. Indeed, the issue of understanding information isn’t now just confined to the doctor/patient relationship. For example, new technology is giving rise to further questions of autonomous provision of health data.</p>
<p>The most recent and stark illustration of this is Apple’s release of a series of health monitoring apps, <a href="http://www.robertsjackson.co.uk/news/asthma/apple-unveils-health-app-platform-resarchkit/">collectively known as ResearchKit</a>. These allow patients to enrol in medical research studies at their choosing, using their iPhone or Apple Watch. Patients can collect data relating to diabetes, Parkinson’s disease and asthma. But understanding how this information will be used is vital to the consent process if the handing over of data is to be truly autonomous. The point is, regardless of physical or data risk, simply having more information available to us is not enough.</p>
<h2>What do you value most?</h2>
<p>It is here we need to realise as patients that real understanding takes place against a network of personal convictions, values and outlooks that we need to reflect on and and consider – and acknowledge that all of this may also lead to uncertainty. We may be uncertain, for example, about how our values weigh up in relation to one another. We may be uncertain as to whether our convictions would yield in particularly grave circumstances. We might even be uncertain about the long-term effects of a proposed treatment option, relative to the values we hold most dear to our lives.</p>
<p>When it comes to real patient autonomy, others must respect our ability to express our character-values in the decisions that we make and we must respect it ourselves. <a href="http://www.theguardian.com/books/2011/mar/31/ronald-dworkin-morality-dignity-hedgehogs">To paraphrase Ronald Dworkin</a>: at a minimum, we as patients cannot be allowed to think that we have justification as well as mere selfishness on our side. We can all take steps in the right direction to make the patient-professional relationship better. Only then will we be able to make the most of the Montgomery case. The medical profession can no longer solely decide what we should or shouldn’t be told in law. But we, as patients, also need to take the initiative ourselves.</p><img src="https://counter.theconversation.com/content/39604/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Clark Hobson 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>You can make decisions about your health, but only if you have all the options.Clark Hobson, Teaching Fellow, University of BirminghamLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/357782015-01-07T06:15:55Z2015-01-07T06:15:55ZCourt decision on consent must put the onus on doctors to fully disclose risks<figure><img src="https://images.theconversation.com/files/68215/original/image-20150105-13860-18mt730.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Doctors can't always know best.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-112862074/stock-photo-doctor-explaining-diagnosis-to-her-female-patient.html?src=JGmpzaApUC_5iWdoEXkIDg-1-28&ws=1">Consent by Shutterstock</a></span></figcaption></figure><p>The law of consent to medical procedures is (to paraphrase legal philosopher HLA Hart) “tantalisingly obscure”. <a href="http://www.ministryofethics.co.uk/?p=6&q=1">Narrowly interpreted</a>, the law sets out a professional standard regarding the risks a medical professional must disclose to a patient when carrying out a procedure. Astonishingly, the idea of what is considered informed consent primarily comes from case law, defined by decisions made in specific court challenges. It doesn’t really focus on the patient, but on the medical profession – something that is out of step with how most of us likely see the idea of consent. </p>
<p>Cases such as <a href="http://www.1cor.com/1315/?form_1155.replyids=1183">Birch v UCL Hospital NHS Foundation Trust</a> in 2008 show that respecting patient autonomy is becoming increasingly important. Here, the claimant said medics failed to adequately consider and relay the risks of a particular procedure and those of a less invasive alternative. </p>
<h2>The Montgomery case</h2>
<p>It is clear the issues surrounding consent are ethical, not medical in nature. Now another defining medical law case is about to be decided. <a href="https://www.supremecourt.uk/cases/uksc-2013-0136.html">Montgomery (AP) v Lankarshire Health Board</a> has given <a href="https://www.supremecourt.uk/">the supreme court</a> an opportunity to address the ethics of when a medical professional has been less than forthright in disclosing certain risks of a procedure. It is crucial that the court seizes the opportunity with both hands. </p>
<p>The facts of the case are heartbreaking. It concerns Nadine Montgomery, a small pregnant woman with diabetes. Because women with diabetes are <a href="http://perinatology.com/perinatology/Volume1-Issue4/Big%20Babies.htm">likely to have larger than average babies</a> there was an increased risk of shoulder dystocia – when a baby’s shoulders are obstructed by the mother’s pelvis during delivery. Because of this, Montgomery’s son was deprived of oxygen and was born with cerebral palsy. Montgomery contends that her obstetrician was legally negligent in managing her pregnancy because she failed to warn of the risks presented by natural delivery (including shoulder dystocia), as well as the option of a cesarean section <a href="https://www.supremecourt.uk/cases/uksc-2013-0136.html">following a CTG trace</a> (which records foetal heartbeat and contractions during pregnancy). The health board argues that their duty to warn of risk would only have been triggered by the risk of a grave adverse outcome, but because this risk was so low and Montgomery had not directly asked, no warning was given. </p>
<p>The case was heard by the supreme court in July and its judgement should be delivered in early 2015.</p>
<h2>Why Montgomery matters</h2>
<p>Montgomery is of real importance. It is the first proper opportunity, since Sidaway v Bethlem Royal Hospital Governors almost 30 years ago, that the highest court has had to deal with the issue of consent. <a href="http://www.ministryofethics.co.uk/?p=6&q=1">Sidaway concerned a patient</a> who had been left paralysed after an operation on a trapped nerve. While Sidaway lost a claim for negligence, the case did establish that doctors have a duty to give patients enough information to help them come to a judgement about how necessary a procedure is and about any alternatives. But importantly, the Sidaway court concluded that a respectable body of medical opinion agreed that it was not necessary to warn a patient of every risk.</p>
<p>It is not in dispute that Montgomery was not given the full facts regarding the risk of shoulder dystocia and the alternative course of caesarean section. The pertinent question is whether this non-disclosure was negligent. It is clear, ethically, that there should have been full disclosure. The physical stature of Montgomery and the potential harm of shoulder dystocia from a natural birth meant that this should have occurred – and the same for any alternative treatment. This is to respect Montgomery’s autonomy. But rather than focusing solely on the conduct of the professional, a viable, if not weightier, argument is that the court should strive to protect a patient’s autonomy. </p>
<h2>Profound implications</h2>
<p>The implications of the case will be profound. On the one hand, the supreme court could really grasp the nettle. It could recognise the standards of non-negligent disclosure (which would put the onus on the profession to disclose rather than rest only on their medical judgement) are based on outdated, unsound ethical principle. This would herald an explicitly patient-oriented approach to consent. </p>
<p>It would also recognise, rightly, that the main driver behind the law on consent should be to enable patients to make a substantially informed, voluntary decision. In 2001, Lord Woolf, England and Wales’ top judge <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1173181/">criticised judges for being too deferential</a> to the medical profession.</p>
<p>Alternatively the supreme court could adopt a conservative approach, and fail to give put the onus on the patient’s rights. Yes, there is a growing recognition of patient rights. Yet the lower courts have still traditionally been reluctant to shift the focus from professionals to patients (and lower courts have of course previously decided in favour of the health board). In adopting this approach, the law on consent would be left at odds with incredibly important ethical and social values. </p>
<h2>Medical and ethical experts</h2>
<p>The court should take the bold step of ensuring the law of consent focuses on the risks a patient would wish to be informed of. Strictly speaking, the current test of negligent risk disclosure is based on customary practice – essentially, whether other professionals are doing the same. This standard is inadequate for a number of reasons.</p>
<p>If standards of disclosure are set by custom, there is the possibility of risk disclosure being inadequate across the profession while still being legally and ethically permissible. These concerns are <a href="http://medlaw.oxfordjournals.org/content/8/1/85.full.pdf">well-documented</a>. Most importantly though, the disclosure of risks <a href="http://www.bbc.co.uk/programmes/p00h2dlj">doesn’t involve technical medical skills</a> but communication skills not exclusive to medical professionals. The ethical issue is whether the medical professional has enabled the patient to make a meaningful choice about a medical procedure. This is done by providing them with material information about the risks associated with that procedure.</p>
<p>The Montgomery case could change medical law for the better. Baroness Hale, the judge in this case is no stranger to novel and expansive approaches and I hope she adopts a like-minded approach here. Montgomery will be symbolically and substantively important. We are all patients at some point in our lives and the issue of consent affects us all. </p>
<p>Substantially focusing on medical professionals when deciding on standards of disclosure, to the exclusion of patients, undermines the point that it is patients who ultimately must consent. It is time that the law caught up with society and addressed this. The judgement will signal an important aspect of the legal standard of care a medical professional is committed to.</p>
<p></p><img src="https://counter.theconversation.com/content/35778/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Clark Hobson 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 law of consent to medical procedures is (to paraphrase legal philosopher HLA Hart) “tantalisingly obscure”. Narrowly interpreted, the law sets out a professional standard regarding the risks a medical…Clark Hobson, Teaching Fellow, University of BirminghamLicensed as Creative Commons – attribution, no derivatives.