tag:theconversation.com,2011:/global/topics/pcehr-2447/articlesPCEHR – The Conversation2015-05-11T05:30:46Ztag:theconversation.com,2011:article/416012015-05-11T05:30:46Z2015-05-11T05:30:46ZNew name and opt-out policy won’t save the personal health record<figure><img src="https://images.theconversation.com/files/81159/original/image-20150511-22733-iwoqhj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Australians will have to opt out of the new system.</span> <span class="attribution"><a class="source" href="http://www.shutterstock.com/pic-162424088/stock-photo-young-beautiful-woman-using-a-laptop-computer-at-home.html?src=KQKTQWFpqSDfsDdRaTmoqg-1-32">dotshock/Shutterstock</a></span></figcaption></figure><p>The federal government is <a href="http://www.smh.com.au/federal-politics/political-news/australians-to-benefit-from-sussan-leys-ehealth-health-records-revamp-20150509-ggxkew.html">set to spend</a> A$485 million to rescue Australia’s failed personalised electronic health record project. All Australians will be set up with a record and can opt out, in contrast to the previous system where patients opted in.</p>
<p>The new system, called myHealth Records, will be revised according to the recommendations of a <a href="http://health.gov.au/internet/main/publishing.nsf/Content/46FEA5D1ED0660F2CA257CE40017FF7B/$File/FINAL-Review-of-PCEHR-December-2013.pdf">report</a> commissioned by the former health minister Peter Dutton in 2013. The report had 38 recommendations to improve the existing Personally Controlled Electronic Health Record system (PCEHR). The very first was to change the name from the less-than-catchy PCEHR (pronounced “pecker”) to the only slightly more acceptable myHealth Record. </p>
<p>Other recommendations included the dissolution of the National E-Health Transition Authority (NEHTA), the organisation widely blamed for the overly complicated and unusable system that resulted from nearly A$1 billion in funding. In its place will be an oversight organisation called the Australian Commission for e-Health that will have a variety of sub-committees reporting into it.</p>
<p>The report also tried to address another criticism of the system by tackling the incentivisation of GPs to actually spend time uploading data to their patients’ personal records. The recommendation here was to tie cash incentives to uploading data and that billing for GP management plans require these plans to be uploaded to the patient’s myHealth record.</p>
<p>Probably the biggest change from a political perspective is the default creation of a record for every Australian, then allowing people to opt out. This would certainly address the low take-up rate of the PCEHR. After three years, only two million people have <a href="http://www.smh.com.au/federal-politics/political-news/australians-to-benefit-from-sussan-leys-ehealth-health-records-revamp-20150509-ggxkew.html">registered</a> for a record so far, with the majority of these records being empty of any meaningful data.</p>
<p>The <a href="http://health.gov.au/internet/main/publishing.nsf/Content/46FEA5D1ED0660F2CA257CE40017FF7B/$File/FINAL-Review-of-PCEHR-December-2013.pdf">PCEHR review report</a> showed that even by December 2013, consumer access to the system was dropping rapidly and provider access stayed flat, despite increasing amounts of content being put into the system.</p>
<p>While some of the changes proposed for the personal record may increase general usage of the system, it still remains fundamentally flawed. </p>
<p>The first problem is that the system still represents a “scrapbook” approach to a clinical record. There is no guarantee that all the health professionals involved in the care of a patient will participate and supply information, nor that the information supplied will be complete. </p>
<p>Couple that with the ability of the patient to hide aspects of their record and the final picture is not only incomplete, but acting on it becomes a significant clinical risk. UNSW Australia researcher Professor Enrico Coiera has detailed the extensive clinical risks inherent in a personal record <a href="http://coiera.com/2013/11/29/submission-to-the-pcehr-review-committee-2013/">here</a>. </p>
<p>Using the record in clinical practice is extremely difficult. In fact, the Australian Medical Association’s own <a href="https://ama.com.au/sites/default/files/documents/AMA_Guide_to_using_the_PCEHR_Final_June_2012_Formatted_300812.pdf">guidelines</a> details that the personal record is only a “memory prompt” for the patient and that “remains the treating medical practitioner’s responsibility to take a clinical history from their patient”. In other words, a doctor can not rely on the personal record to make clinical decisions. </p>
<p>Coiera goes further and <a href="https://www.mja.com.au/journal/2011/194/2/do-we-need-national-electronic-summary-care-record">voices</a> a view that I share which is that summary records are essentially pointless and that the only shared record that makes sense is a fully distributed and shareable clinical record. All practitioners involved in the care of the patient would have access to the record or could obtain appropriate access when necessary. </p>
<p>There are variations of this model that also would work. In one model, only the information pertinent to the current treatment of a patient is shared among the care team and the patient using a peer-to-peer mechanism. </p>
<p>There is the possibility that the sharing mechanism could actually use a <a href="http://en.wikipedia.org/wiki/Bitcoin#Block_chain">shared ledger</a> system such as the one that underpins cyber-currencies. A major benefit of this system would be that it would be unnecessary for the government to be involved at all, as no centralised infrastructure would be needed.</p>
<p>According to <a href="http://www.smh.com.au/federal-politics/political-news/australians-to-benefit-from-sussan-leys-ehealth-health-records-revamp-20150509-ggxkew.html">media reports</a>, the government expects the myHealth Record to save A$2.5 billion a year. Where this number came from is unknown but it is different from the original estimates of Booz and Co which put the <a href="http://health.gov.au/internet/main/publishing.nsf/Content/46FEA5D1ED0660F2CA257CE40017FF7B/$File/FINAL-Review-of-PCEHR-December-2013.pdf">annual savings</a> at A$7.6 billion. The proviso here was that this was a fully implemented system with 100% participation. </p>
<p>However, savings should be treated with a great deal of scepticism as there is no mechanism by which incomplete participation in this system would be able to deliver any benefits, let alone those claimed in the budget. </p>
<p>It is really unclear why the government is persisting with a system that, in the eyes of e-health experts such as Sydney clinician and commentator <a href="http://aushealthit.blogspot.com.au/">Dr David More</a>, is deeply flawed. It is possible that in supporting this scheme, they don’t have to think of alternatives and can be seen to be participating in some sort of digital health strategy.</p><img src="https://counter.theconversation.com/content/41601/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Glance receives funding from the commercialisation of a clinical platform that supports the PCEHR. He has received funding from the Department of Health and Ageing in the past.</span></em></p>Despite A$485 million of rescue funding, there is no guarantee health professionals will participate in the e-health scheme, nor that the information supplied will be complete.David Glance, Director of UWA Centre for Software Practice, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/218912014-03-06T19:32:40Z2014-03-06T19:32:40ZRedefining privacy in the age of Edward Snowden<figure><img src="https://images.theconversation.com/files/40259/original/tzk6fdws-1391129573.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In the age of Edward Snowden regulators and the public are rethinking privacy.</span> <span class="attribution"><span class="source">Abode of Chaos/Flickr</span></span></figcaption></figure><p><em>What does privacy mean in an age of ongoing privacy breaches? With new privacy law coming online in Australia on March 12, our Privacy in Practice series explores the practical challenges facing Australian business and consumers in a world rethinking privacy.</em></p>
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<p>If you are trying to make sense of privacy in the age of Edward <a href="https://theconversation.com/the-internet-after-snowden-what-now-20775">Snowden</a>, Facebook, <a href="https://theconversation.com/see-change-is-google-glass-all-its-cracked-up-to-be-13268">Google Glass</a>, <a href="https://theconversation.com/amazons-eyes-in-the-sky-and-pig-farmers-might-fly-21000">drones</a>, <a href="https://theconversation.com/social-rejection-why-snapchat-turned-down-facebooks-offer-20354">Snapchat</a>, genetic <a href="http://blogs.crikey.com.au/croakey/2014/01/30/the-new-world-of-big-health-data-some-questions-about-profits-privacy-and-the-public-interest/">profiling</a> and the Personally Controlled Electronic Health Record you could be forgiven for being confused. In 2014 the confusion isn’t going to go away. </p>
<p>That’s because people have different views of privacy, different priorities and get mixed messages from an increasingly complex patchwork of Commonwealth, state and territory law. Law is about sending messages rather than just about punishment.</p>
<p>On march 12 the amended national Privacy Act 1988 comes into effect. The Act covers all Australians but is weakened by exceptions. In the words of one of my students it has “more holes than swiss cheese”. </p>
<h2>Limits of the law</h2>
<p>The Act covers information privacy – in essence the creation and use of computer files – rather than all privacy. It doesn’t, for example, cover the increasingly prevalent workplace drug testing, police strip searches and nastiness such as covert private videos of your bedroom. </p>
<p>It is administered by the Office of the Australian Information Commissioner (<a href="http://www.oaic.gov.au">OAIC</a>), an agency that is seriously <a href="http://www.peteraclarke.com.au/2013/09/13/delays-in-dealing-with-complaints-by-privacy-commissioner/">under-resourced</a>. There are questions about its expertise and apparent permissiveness in dealing with big business and big government agencies. The OAIC has been softer than its peers in Europe, which are increasingly sending a strong <a href="https://theconversation.com/google-slapped-hard-in-europe-over-data-handling-10270">legal message</a> about privacy invasions by Google, Facebook and the NSA.</p>
<p>The Act permits any collection of information or invasion of privacy that is lawful. In the absence of constitutionally protected human rights, that “lawfulness” simply means whatever the government of the day can get through the parliament. That is convenient but results in complexity, confusion and omission. </p>
<h2>In good company?</h2>
<p>The Act sits alongside over 500 other Acts and provisions dealing with privacy. </p>
<p>Some are benign, such as protection of the <a href="https://theconversation.com/big-brothers-little-helper-why-people-say-no-to-the-census-7648">census</a> and tax records. There is a strong social good in people providing information to government. We could not enjoy the benefits of the welfare system and of the electronic payments system without providing some information to a wide range of agencies and businesses. We do so on the basis of trust, which public and private sector actors are tempted to abuse.</p>
<p>The value of other Acts depends on your perspective. Some critics for example regard <em>any</em> data collection by intelligence agencies as utterly abhorrent. Others, such as this author, <a href="https://theconversation.com/i-spy-you-spy-we-all-spy-but-is-it-legal-20540">recognise</a> the appropriateness of surveillance in particular circumstances. </p>
<p>As media consumers and increasingly media creators we are habituated to practices that disrespect the privacy of other people or that facilitate the disregard of our own privacy. That complicity fosters visceral responses by the commercial media to inquiries by <a href="https://theconversation.com/leveson-inquiry-into-uk-press-the-experts-respond-11082">Leveson</a> and <a href="https://theconversation.com/self-regulation-and-a-media-we-can-trust-6466">Finkelstein</a>. Media executives have for example rationalised egregious privacy abuses through claims that freedom of speech is more important than privacy as a freedom from interference. Claims that the public have a “right to know” or that all publication is “in the public interest” confuses public curiosity with public interest. What’s good for Channel 7 or News Corp is not necessarily good for you or I.</p>
<h2>Basic rights, not assumed</h2>
<p>Non-interference is a deeply traditional value, inherent in common law since the middle ages and notions that an englishman’s home is his castle. Regrettably it is not a value that seems to be acknowledged by the federal government in rhetoric about winding back law that erodes <a href="http://inside.org.au/the-brandis-agenda/">traditional freedoms</a>. One freedom - disregarded by creeping surveillance law - is the freedom to be left alone if you are in a private space and causing no harm.</p>
<p>This year will see the <a href="http://www.alrc.gov.au/publications/invasions-privacy-ip43">report</a> by the Australian Law Reform Commission about establishment of a <a href="https://theconversation.com/far-from-sinister-privacy-laws-might-mean-media-does-its-job-better-3326">privacy tort</a>, with scope for action by individuals whose privacy has been unlawfully invaded. The report follows strong recommendations by other commissions and parliamentary committees for a tort that would fix holes in the privacy patchwork and deal with technological challenges such as <a href="https://theconversation.com/expect-more-spy-drones-if-ag-gag-laws-introduced-18194">drones</a> and Google Glass.</p>
<p>If we are thinking about principles we need to consider potentially conflicting rights. There is no simple answer and we cannot magic away policy dilemmas in the style of one academic who dismissed privacy as something for woolly-minded members of the public who believe in santa and <a href="http://barnoldlaw.blogspot.com.au/2013/02/bigthink.html">unicorns</a>. </p>
<p>Do you have a right to be free of interference? Do you have a right to know, a right that covers celebrities and your neighbours and your children and the wife of the Indonesian president? Do we need watchdogs with teeth and a willingness to go out in stormy weather? Should we leave privacy to Mr Gates, Mr Brin, Mr Snowden and Mr Zuckerberg?</p>
<p>We need to look at principles and have an informed community discussion about social goods rather than being driven by personal or bureaucratic convenience.</p><img src="https://counter.theconversation.com/content/21891/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bruce Baer Arnold 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>What does privacy mean in an age of ongoing privacy breaches? With new privacy law coming online in Australia on March 12, our Privacy in Practice series explores the practical challenges facing Australian…Bruce Baer Arnold, Assistant Professor, School of Law, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/205632013-11-28T03:47:31Z2013-11-28T03:47:31ZElectronic health records review set to ignore consumer interests<figure><img src="https://images.theconversation.com/files/36355/original/qz29gqbr-1385599142.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Doctors' interests will be represented at the inquiry but it seems consumer interests could be ignored.</span> <span class="attribution"><span class="source">Brian/Flickr</span></span></figcaption></figure><p>The rollout of the Australia’s Personally Controlled Electronic Health Record (PCEHR) has encountered various problems since its inception. But it all got worse when the new health minister, Peter Dutton, recently ordered a review of the project. Unfortunately, it seems consumer interests may be neglected in the inquiry.</p>
<p>The PCEHR contains a summary of your health information such as diagnoses, allergies and medications. It’s expected to improve health outcomes, save time and money, reduce medical errors, and allow people to be more involved in their own care. </p>
<p>Whether you choose to have a record is up to you, as is what goes into it, and who can access it. This secure online record, according to the <a href="http://ehealth.gov.au/internet/ehealth/publishing.nsf/content/home">eHealth website</a>, can be shared with your doctors, hospitals and other health-care providers “to provide you with the best possible care”. </p>
<p>Some people will not register for a PCEHR because of poverty, social instability or major family stress. Others have different priorities or privacy concerns that override their interest in sharing their health information. </p>
<h2>A whole lot of trouble</h2>
<p>In recent weeks, it’s become apparent that the PCEHR project is in a lot of strife. </p>
<p>There’s been low uptake by consumers (about 900,000) and by health providers (about 5,500 registered in the system but only a few hundred doctors uploading shared health summaries). And its cost to date is estimated at A$1 billion.</p>
<p>The new federal health minister, Peter Dutton, has <a href="http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2013-dutton010.htm">announced an inquiry into the system</a>. The review panel consists of three people – Richard Royle (vice-president of the Australian Private Hospitals Association), Dr Steve Hambleton (president of the AMA), and Andrew Walduck (chief information officer of Australia Post).</p>
<p><a href="http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2013-dutton010.htm">According to the health minister</a>, the panel’s expertise with “information technology, patient and medical services and business administration” is “the right mix to put the electronic health records program back on track.”</p>
<p>Doctors’ interests are going to be represented in the inquiry by the Australian Medical Association (AMA), but it’s not at all certain that consumer interests will be.</p>
<p>The AMA is on record arguing that the control of the electronic health record should be taken away from patients and handed to doctors, and have taken the same position in their <a href="https://ama.com.au/submission-personally-controlled-electronic-health-record-system-draft-concept-operations">submission to the inquiry</a>. And <a href="http://www.themercury.com.au/news/billion-ehealth-system-rejected-by-doctors-as-8216shambolic8217/story-fnj3twbb-1226722256752">doctors are demanding pay</a> for writing and uploading patient health summaries.</p>
<p>It seems we’ve learnt nothing from the UK experience where a “technical and managerial focus” and a failure to think about ethics and values has been <a href="http://jme.bmj.com/content/38/9/535.abstract">cited by my colleagues and I</a> as a key factor in the failure of the country’s electronic health record system.</p>
<h2>Balancing priorities</h2>
<p>Who on the panel is going to be looking out for the interests of health consumers? Consumers’ ability to control who has access to their health information might lead health providers to distrust the records, but there may be much more at stake for the former. </p>
<p>A <a href="https://www.mja.com.au/insight/2013/31/jane-mccredie-risky-assumptions">recent article in MJA Insight</a> (a newsletter of the Medical Journal of Australia), for instance, discussed the significant body of evidence showing people with mental illness receive a lower standard of care when they visit a doctor for a physical illness. The author called this “diagnostic overshadowing”.</p>
<p>Diagnostic overshadowing happens when doctors make unwarranted assumptions about people with mental illness. Faced with the possibility of their physical symptoms being dismissed or attributed to current or past mental health issues, it’s understandable that people may want to be selective about what they share and with whom.</p>
<p>It’s vital health consumers maintain control over what goes into their record and who can access it. And that they can seal or lock off certain information. </p>
<p>Health providers are worried about patients being allowed to withhold health information. These concerns about making decisions based on records with incomplete information are unjustified because they can still engage with the patient during the consultation and ask questions.</p>
<p>The responsibility and cost of keeping patient records traditionally belongs to health providers, who will benefit from the expected time and cost savings of the PCEHR. Nevertheless, general practices are being given monetary incentives to encourage participation. </p>
<p>This seems wrong. Our overburdened health system should not be paying health providers to meet their professional and ethical obligation to maintain patient records and facilitate patient care. Health providers’ participation should, in fact, be made mandatory. </p>
<p>And who on the review panel will be looking at ethical questions such as who should pay for the implementation of the PCEHR? This is not just an economic question; it’s a question about priorities and rationing, requiring deliberation on costs and benefits and consideration of what counts as a cost or a benefit, and to whom.</p>
<p>The panel will invite submissions from the public and is reporting back to the minister by mid-December, 2013. Let’s hope consumers as well as doctors, software vendors and business interests are able to have a say.</p><img src="https://counter.theconversation.com/content/20563/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Merle Spriggs has conducted research funded by the Institute for a Broadband-Enabled Society (IBES), University of Melbourne. In 2010 and 2011, she has had travel and accommodation paid for on her behalf by the National E-Health Transition Authority (NEHTA) to attend round table discussions on the Personally Controlled Electronic Health Record (PCEHR). </span></em></p>The rollout of the Australia’s Personally Controlled Electronic Health Record (PCEHR) has encountered various problems since its inception. But it all got worse when the new health minister, Peter Dutton…Merle Spriggs, Research Fellow at the Children's Bioethics Centre at the University of Melbourne and , Murdoch Children's Research InstituteLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/155582013-07-02T20:52:52Z2013-07-02T20:52:52ZIs the government’s missed health record target meaningful?<figure><img src="https://images.theconversation.com/files/26701/original/kq3hvhwq-1372743961.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Less than 5,000 individual providers have signed up to access the health record portal despite government incentives.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>The government has <a href="http://www.theaustralian.com.au/australian-it/government/labor-comes-up-short-on-personally-controlled-e-health-plan/story-fn4htb9o-1226672783830">failed to meet</a> a self-set target of 500,000 registrations of its Personally Controlled Electronic Health Record (PCEHR) by July 1. </p>
<p>As at June 30, the Department of Health and Ageing said that total number of users was 397,745. The majority of these registrations resulted from a recent push by DoHA using <a href="http://www.pulseitmagazine.com.au/index.php?option=com_content&view=article&id=1459:contractors-hired-for-pcehr-but-medicare-locals-not-happy&catid=16:australian-ehealth&Itemid=328">consultants</a> to sign people up at public hospitals and at eHealth <a href="http://www.news-mail.com.au/news/hundreds-sign-ehealth/1905285/">roadshows</a>.</p>
<p>Still, even if the government had met the target of 500,000, it would have been a meaningless gesture. The vast majority of those who have signed up, if they ever get around to logging in, will be greeted with an empty record. </p>
<p>Given the lack of active participation on the part of GPs, as well as the lack of public hospital systems to integrate with PCEHR, there’s little evidence to suggest that this is going to change any time soon.</p>
<p>So far, only 4,805 individual providers have <a href="http://www.theaustralian.com.au/australian-it/government/labor-comes-up-short-on-personally-controlled-e-health-plan/story-fn4htb9o-1226672783830">signed up</a> to access the PCEHR portal. This is despite the fact that the government provides incentives to GPs to connect to the system by <a href="http://pip.nehta.gov.au/">paying</a> them the Practice Incentive Payments for eHealth (ePIP). </p>
<p>Despite these payments, GPs still struggle to see the benefit of spending time curating shared records when the legal liabilities are still unknown but are <a href="http://www.holmanwebb.com.au/publications/update-on-personally-controlled-electronic-health-records-legal-and-privacy-issues">potentially</a> severe.</p>
<p>The cost of the ongoing maintenance of these largely empty records is <a href="http://issuu.com/pulseitmagazine/docs/pulseit_may2012?e=6528534/3359046%5D">about</a> AUS$80m a year. And that’s just the baseline. It’s clear that a great deal more funding will be needed to try and lift the level of meaningful use of PCEHR. </p>
<p>The problem for governments is that increasing spending on a system becomes progressively harder the longer it remains largely unused. What’s more, the devolved nature of the Australian health system makes it extremely unlikely that we’ll ever see true and meaningful use of the system.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=195&fit=crop&dpr=1 600w, https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=195&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=195&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=245&fit=crop&dpr=1 754w, https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=245&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/26664/original/7tcph263-1372730881.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=245&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The author’s Personally Controlled Electronic Health Record (PCEHR).</span>
<span class="attribution"><span class="source">David Glance</span></span>
</figcaption>
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<p>What we will continue to see however, are reports of increasing numbers of registrations, data about the number of people who accessed the system and how much administrative data has been added. </p>
<p>The latter figure, in particular, is an easy one for the government. All Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data gets added automatically. This shows when individuals have claimed anything on MBS or filled out a script at the pharmacist. </p>
<p>Again, this data is clinically meaningless and of marginal benefit to an individual. Its only use is for, perhaps, reminding people when they last saw their doctor.</p>
<p>In the United States, President Barack Obama initiated a program to provide physicians with incentives to adopt electronic health records. By <a href="http://www.californiahealthline.org/articles/2013/5/23/55-of-doctors-80-of-hospitals-have-received-ehr-incentives">May this year</a>, 55% of eligible office-based providers (291,325) had received nearly US$5.9 billion in payments for adopting electronic health records. </p>
<p>But even there, only 27% of doctors having a electronic health record actually met the core objectives of meaningful use criteria for the system. At least the criteria for defining what <a href="http://cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/EP-MU-TOC.pdf">meaningful use means</a> are far more stringent in the United States than the simple user registration count being used by the Australian Department of Health and Ageing for PCEHR.</p>
<p>As I have argued <a href="https://theconversation.com/everything-you-need-to-know-about-australias-e-health-records-5516">before</a>, it’s possible that we will see some benefits come from infrastructure that has been developed as part of PCEHR. Things such as individual health identifiers, for example, may eventually make identifying patient test results less prone to error. </p>
<p>In the meantime, we are a considerable way off seeing any clinical benefits from PCEHR. Indeed, we could question whether there are not better things within the health system that the nearly AUS$1 billion spent so far on PCEHR could have been spent on.</p>
<p>For the time being however, empty PCEHR records like my own will stand as testament that getting through the registration for the record is as devoid of meaning as its content.</p><img src="https://counter.theconversation.com/content/15558/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Glance is affiliated with a clinical product that does not implement the PCEHR</span></em></p>The government has failed to meet a self-set target of 500,000 registrations of its Personally Controlled Electronic Health Record (PCEHR) by July 1. As at June 30, the Department of Health and Ageing…David Glance, Director, Centre for Software Practice, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/55162012-03-01T03:20:20Z2012-03-01T03:20:20ZEverything you need to know about Australia’s e-health records<figure><img src="https://images.theconversation.com/files/8179/original/qmwkzz9b-1330474211.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The health of the personally-controlled electronic health records may itself be in doubt.</span> <span class="attribution"><span class="source">jfcherry</span></span></figcaption></figure><p>From July 1 2012, Australians will be <a href="http://www.computerworld.com.au/article/414597/pcehr_track_1_july_rollout/">able to register</a> for their own Personally Controlled Electronic Health Record (PCEHR). At least this was what Rosemary Huxtable, deputy secretary of the department of health and ageing has <a href="http://www.computerworld.com.au/article/414597/pcehr_track_1_july_rollout/">reaffirmed</a> to a parliamentary senate committee. At that point, $467m will have been spent on the project. </p>
<p>To say that the project has its doubters and critics would be an understatement. The <a href="http://www.msia.com.au/">Medical Software Industry of Australia</a> (MSIA), the <a href="http://ama.com.au/">Australian Medical Association</a> (AMA) and the <a href="http://ihe-australia.wikispaces.com/Consumer">Consumers e-health Alliance</a> are among the many groups that spoke to the senate committee about <a href="http://aushealthit.blogspot.com.au/2012/02/outcome-of-senate-pcehr-enquiry-will.html">their concerns</a> regarding the implementation of the PCEHR. Their complaints are varied and range from <a href="http://www.privacy.org.au/Papers/PCEHR-Privacy-110215.pdf">privacy</a>, to <a href="http://www.computerworld.com.au/article/414441/e-health_records_marred_by_project_governance_failures_apf/">governance and liability</a>, through to doubts about whether anyone would actually <a href="http://www.computerworld.com.au/article/413606/_opt-in_will_undermine_e-health_records_ama/">use the system</a>.</p>
<p>Interestingly, advocates and critics both agree on the potential usefulness of electronic health records to improve patient outcomes and increase the potential efficiency of health services – even though <a href="http://www.sciencedirect.com/science/article/pii/S1067502709000942">evidence is scant</a> that electronic health records, in and of themselves, improve the quality of care. </p>
<p>Leaving aside the question of the actual likelihood of the system being operational by July 1 2012, the question is, what exactly will we have and will it bring about significant improvements in the Australian health system?</p>
<h2>What is a PCEHR?</h2>
<p>The <a href="http://www.ehealthinfo.gov.au/personally-controlled-electronic-health-records/about-the-pcehr-system">PCEHR</a> will potentially allow consumers to have access to a summary of their medical information including medications, medical history, information about allergies and adverse drug reactions and letters and documents. This information is supposed to come from a range of health providers, such as GPs, specialists and hospitals.</p>
<p>The promise of a person having access to their health information held by others is alluring. The fact that we can’t look up when we, or a child, had a vaccination or were given a medication or had an X-ray is a reflection of how far behind technology the health industry is than say, banking. Of course, some health-care organisations, such as <a href="https://healthy.kaiserpermanente.org/html/kaiser/index.shtml">Kaiser Permanante</a> in the United States have done exactly this, providing not only an electronic record; they have gone further by allowing customers to interact with their doctors using secure messaging and to make appointments electronically.</p>
<h2>If you build it, they will come</h2>
<p>The difficulty with summary records, such as the PCEHR, comes with trying to use the information as anything other than a precis, especially in the case of shared care. Professor Enrico Coiera of the University of New South Wales <a href="http://mja.com.au/public/issues/194_02_170111/coi10895_fm.html">has argued</a> that summary records have little clinical value. </p>
<p>The experience of summary records in the United Kingdom showed low levels of adoption. Like Australia’s PCEHR, it was an “opt-in” system requiring an arduous verification process to sign up. </p>
<p>Opt-in systems are always going to struggle with adoption. Psychologists Johnson and Goldstein have <a href="http://www.sciencemag.org/content/302/5649/1338.short">showed</a> that consent rates for organ donation in countries such as Germany, where the system requires people to opt-in, were 12% compared with Austria, which has an opt-out system, where rates are 99.98%. </p>
<p>And with low adoption comes low use. The UK’s personal electronic health record, HealthSpace <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2982892/">showed that</a> between 2007 and 2010, only 172,950 people opened a basic account, and 2,913 people opened an advanced account. Patients perceived HealthSpace as neither useful nor easy to use.</p>
<p>Google <a href="http://mobihealthnews.com/11453/official-google-health-shuts-down-because-it-couldnt-scale/">recently shut down</a> its personal electronic health record Google Health. The company found it difficult to engage people beyond the small group of technologically savvy patients and fitness fanatics.</p>
<p>The reasons why users will end up using any information technology system are varied and complicated but <a href="http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.88.3031&rep=rep1&type=pdf">research</a> has shown that the benefits of the system are a key driver. If the benefits are there, they will outweigh even privacy concerns. With a summary record, the benefits are so few that issues such as <a href="http://www.privacy.org.au/Papers/PCEHR-Privacy-110215.pdf">privacy</a>, <a href="http://www.computerworld.com.au/article/414441/e-health_records_marred_by_project_governance_failures_apf/">governance and liability</a> become disincentives to using the system.</p>
<h2>A single, shared electronic health record</h2>
<p>In contrast to a summary record like the PCEHR, the <a href="http://www.kamsc.org.au/">Kimberley Aboriginal Medical Services Council (KAMSC)</a>, in collaboration with The University of Western Australia, is using a <a href="http://www.abc.net.au/news/2012-02-10/e-health-database-trial-in-the-kimberley-feature/3823520/?site=kimberley">web-based electronic health record</a> called MMEx for 22,000 mostly Aboriginal people in the Kimberley region of Western Australia. </p>
<p>With a patient’s consent, the record can be shared with the hospitals, visiting specialists and allied and mental health professionals. All care plans, medications and communications concerning the patient are electronic.</p>
<p>The difference between this approach and the PCEHR is that everyone is working off the same record. Practitioners have to work collaboratively, because their changes are immediately seen by everyone involved in the care of the patient. Combined with telehealth services, this means that care can be provided consistently through the Department of Health WA, KAMSC and the private sector. </p>
<p>This project was unique enough for the OECD to include it in <a href="http://www.praxisinformatik.ch/fileadmin/user_upload/pdf/oecd_ict_finalReport.pdf">a review</a> of global e-health projects.</p>
<h2>PCEHR – the benefits</h2>
<p>It is possible that the PCEHR will be operational in some form by July 1 2012. The <a href="http://www.theaustralian.com.au/australian-it/government/accenture-oracle-bags-major-pcehr-deal/story-fn4htb9o-1226115032514">companies building</a> the customer-facing component (Accenture, Oracle and Orion Health) were involved in delivering a more extensive e-health record project in <a href="http://www.theaustralian.com.au/australian-it/orion-in-the-right-place-at-the-right-time/story-e6frgakx-1225993884268">Singapore last year</a>. </p>
<p>Of more importance however is that Australia will be left with major portions of legislation and infrastructure that will benefit all e-health projects. This includes a <a href="http://www.nehta.gov.au/connecting-australia/healthcare-identifiers">system that provides</a> a unique health-care identifier for each patient and health-care provider. It also includes <a href="http://www.nehta.gov.au/connecting-australia/ehealth-architecture">standards</a> that specify how different systems will talk to each other and a way for all people accessing these systems to <a href="http://www.nehta.gov.au/connecting-australia/nash">be authenticated</a>.</p>
<p>It is very unlikely that the PCEHR will revolutionise health care in Australia any more than its equivalent did in the United Kingdom. From an e-health perspective, this will only come from a single shared electronic health record with clinical protocols and governance that allow health providers to collaborate with a patient in managing their health and wellbeing. But, hopefully, the steps taken in the PCEHR project will accelerate that process in Australia.</p><img src="https://counter.theconversation.com/content/5516/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Glance's Centre is involved with licensing a clinical information system that is mentioned in the article. The centre receives funding that is directly related to this product and is affected by the Personally Controlled Electronic Health Record</span></em></p>From July 1 2012, Australians will be able to register for their own Personally Controlled Electronic Health Record (PCEHR). At least this was what Rosemary Huxtable, deputy secretary of the department…David Glance, Director, Centre for Software Practice, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.