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[caption id="attachment_27770" align="alignnone" width="300"] You create a lot of healthcare data during your life. What happens after it? Tewan Banditrukkanka/Shutterstock[/caption] Jon Cornwall, Victoria University of Wellington Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty. Data about patients is a vital cog in the provision of efficient health services. Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.
Read More: Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model
Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. When you died, your records were either shredded or erased, depending on the technology. But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction. Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value. This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment. These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed. Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create. So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country. Yet the lines become easily blurred. Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used? How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer. [caption id="attachment_27771" align="alignnone" width="300"] Every time you visit a doctor’s office, you create data. Keith Bell/Shutterstock[/caption]

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent. As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear. In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for. Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.
Read More: Human embryo CRISPR advances science but let’s focus on ethics, not world firsts
It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics. Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved. The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects. She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted. Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility. At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world. It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised. The ConversationHealthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised. Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington This article was originally published on The Conversation. Read the original article. [post_title] => Healthcare records: take them to the grave? [post_excerpt] => Our healthcare records outlive us. It's time to decide what happens to the data once we're gone. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 27766 [to_ping] => [pinged] => [post_modified] => 2017-08-07 15:08:17 [post_modified_gmt] => 2017-08-07 05:08:17 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=27766 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [1] => WP_Post Object ( [ID] => 24703 [post_author] => 659 [post_date] => 2016-08-15 13:17:06 [post_date_gmt] => 2016-08-15 03:17:06 [post_content] => Nurse Showing Patient Test Results On Digital Tablet Sitting At Desk Having A Discussion   My Health Record: Medics speak up As the new trials of the My Health Record roll out in Queensland, NSW, WA and Victoria, Government News asks clinicians what might help – or hinder – the progress of the revamped national individual electronic health record. A bit of history The idea of a national individual electronic health record has been around for decades, routinely popping up in report recommendations from government health agencies. It was an idea former Prime Minister John Howard helped spread and one the National Electronic Health Transition Authority (NEHTA) was set up to drive in 2005. Labour introduced the Personally Controlled Electronic Health Record (PCEHR) in 2012 after two years of GP trials. But from its inception, the electronic health record has been dogged with problems and fraught with complexities and it still has not had the uptake needed to fulfil the vision of a concise patient record available in an emergency. Academic Dr Helen Cripps compared the Australian e-health experience to that of Slovenia in her 2011 research paper The Implementation of electronic health records: a two country comparison, and found Australia was making much slower progress. In it, she lists a whole host of reasons for Australia’s sluggish progress in e-health: the country’s complex health care system, with state and federal involvement and a large private health sector; uneven adoption by clinicians;  problems securely sharing data electronically between GPs and other clinicians; the proliferation of different electronic health record formats and systems; fears about data protection and patient privacy; a lack of national direction; the cost of infrastructure, maintenance and training and a disconnect between government-led implementation and software vendors. The new Australian Digital Health Agency opened its doors on July 1, and appointed ts first CEO UK digital whizz Tim Kelsey. It is a clear sign that e-health is seriously back on the government’s agenda but what about the clinicians the government is relying on to make the record valuable? Both Dr Nathan Pinskier, Chair of the Royal Australian College of General Practitioners (RACGP) and Dr Tony Bartone, Vice President of the Australian Medical Association (AMA), have weathered the vicissitudes of the electronic health record over the years. They spoke to Government News about what pitfalls should be avoided this time around and where the road to success lies. Dr Pinskier, who chairs the RACGPs expert committee on e-health and practice systems, says there is no question that individuals should have access to their own healthcare data but he believes that basic things need fixing first, such as making it easier for GPs to refer patients. At the moment, when doctors want to refer patients, for example to specialists, physios and hospitals, they must wrestle with a number of different electronic systems (including Argus, HealthLink and MEDrefer), as well as using fax machines, scanners, emails and letters. He says the technology was built by software vendors and NEHTA but has been gathering dust over the last few years and there is still no one secure, integrated system of referring people electronically. “You start electronically, you finish electronically and everything in between is a mish-mash. You change the business model and then it’s really easy to send data to a national repository.”   Prescription for change   Data quality Both clinicians say that the value of My Health Record will not be fully realised until there is decent data quality and coverage so that health providers can feel confident using the information. Dr Pinskier says there are currently eight sources of data within the My Health Record and patients can also add their own data. Instead, he suggests homing in on the most vital pieces of information: bad reactions to medicines, current medications and allergies. He recalls a hospital doctor searching through a jumble of sometimes conflicting records to find out what medication an out-of-town patient was on. The doctor eventually gave up and phoned the patient’s pharmacist. “What’s the value if you have all these lists for providers to spend hours trawling through the records?” he asks. Dr Pinskier says it is worth looking at alternatives, citing international examples such as Boston Open Notes, where local records of healthcare providers are made available to consumers. The patient sees exactly what the healthcare provider sees, which can also help reinforce medical advice, for example about how to take medication. He says Scotland’s Emergency Care Summary is a good example of how local records work, calling it “simple, effective and functional.” The summary lists essential details such as a person’s name, age and GP and their medications, allergies and bad reactions to medicines, extracting the information from GP records. “There is one source of truth, which is highly accurate and repeatedly uploaded to a national system. That is certainly regarded as a preferred model,” Dr Pinskier says. Dr Bartone, Vice President of the nation’s peak body for GPs, agrees that the success of the individual electronic health record relies on good data and not just from GPs, who he says have always been “ahead of the curve” and early adopters of e-health. The record also relies on getting good information from allied health providers, pharmacies and hospitals, amongst others, in order to get a useful medical summary. This could include pathology results, diagnostic imaging, immunisation, Medicare and Pharmaceutical benefit claims, organ donation, medication and advanced care directives. He says records are not expected to be as detailed as those held by GPs, but a reliable, secure and useful summary. “All of these things go into making up the record but at the moment we have got a situation where some hospitals’ IT platforms won’t allow them to upload information. For example, in Victoria whereas some hospitals were able to upload data right now,” Dr Bartone says. “It’s about an emergency situation where the patient is unknown to the doctor who needs to get some information on them in a hurry. It’s never going to replace the GPs file … it’s not designed to be that. “You don’t need all these details. Other providers need a snapshot of medications, tests and conditions; then they will move on.” A Department of Health spokesperson said that the quality of information uploaded to the My Health Record system reflected the quality of the records kept in local clinical information systems. “It is the responsibility of healthcare providers and is part of their professional standards that they keep accurate and up-to-date records about their patients,” said the spokesperson. “It is anticipated that records which are accessible by both patients and other healthcare providers treating that patient will see an improved quality over time.” Getting clinicians on board Dr Bartone believes the work needs to be clinically-led and the scheme’s practical implications for clinicians, such as cost and increased workload, properly thought through and addressed. He says there has been a lack of engagement with clinicians, caused by “too many people with various agendas pushing different methodologies and ideas” holding the process back so that it failed to deliver enough value to consumers. Although medics were consulted initially under the PCEHR, Dr Bartone believes this fell by the wayside when the project was delivered, with little thought to how it would actually work on the ground. “They expected patients to be registered by doctors in their waiting rooms. That’s a cumbersome and difficult process and these are busy places,” he says. “There was no awareness that this would impose a workload, red tape and duplication. There was lots of money but it wasn’t going to the right people.” The results so far have been questionable in terms of outcomes and performance. “The need to have a robust and reliable individual electronic health record is without question,” Dr Bartone says. “The issues thus far have been in terms of scope and implementation: how and who is controlling it and how it would be rolled out.” But he says offering GPs payments to register a certain number of patients (which has been announced as policy) and making the scheme opt-out for patients, rather than opt-in (which has not, as yet), were both be good ideas. The My Health Record trials have been a mixture of opt-in and opt-out, to test the public’s response. While the Nepean and Queensland trials were opt-out, two earlier trials in Western Australia and Ballarat, Victoria were opt-in. Dr Bartone says it is imperative that the back-end of the system is easy for doctors to navigate and does not involve duplication of effort - which he says had only recent been possible through new software – so it does not impose an additional burden on doctors. “There’s been lots of good will invested over the last four or five years. That will run thin if there are any further problems,” he says. Another discouragement for doctors to use My Health Record has been anxiety that they may be prosecuted under privacy legislation for accessing or sharing information, a fear which Dr Bartone says resulted in disillusionment, even for rusted-on fans of electronic health records. Government News put these concerns to the federal Department of Health. A departmental spokesperson said the My Health Records Act 2012 specifically authorised the collection, use and disclosure of health information in the My Health Record so that there would be no breach of the Privacy Act 1988. “This means that treating healthcare providers can access and use an individual’s My Health Record for healthcare purposes,” the spokesperson said. The spokesperson said the penalties for unauthorised collection, use or disclosure of data - which can be up to $540,000 or two years’ imprisonment - did not apply to accidental misuse. Patients are also able to restrict or remove documents in their My Health Record. “For example, if a healthcare provider inadvertently or accidentally accesses an individual’s My Health Record – they are not liable for a civil or criminal penalty,” said the spokesperson. Healthcare providers can use their judgement about what they upload onto an individual’s My Health Record.  There is nothing in the My Health Records Act 2012 that requires them to upload if they choose not to. Dr Pinskier says that some of the difficulty getting a national e-health record off the ground stems from earlier efforts to appease everybody, patients and multiple healthcare providers, ending in an extremely complex system. The national individual electronic health record became a hybrid of a clinical and consumer record, without quite meeting the requirements of either, he says. “I think we need to go back to basics and ask what we want to achieve – what’s its core purpose? “We are not addressing the questions of utility and functionality. There is still a really good opportunity to see what is it we’re trying to achieve, how best to achieve it and the steps needed to do it.” He is emphatic about how this should be done. “This is not a technological questions, it needs to be clinically led,” Dr Pinskier says. “We need to start again but we need the key clinical stakeholders involved and the clinical community needs to be listened to.” My Health Record trials Opt-in trials began in July in Ballarat, Vic and Western Australia. The Ballarat Health Service help patients register when they are admitted to hospital and their discharge summaries are uploaded to My Health Record. In Western Australia, the trial involves helping chronically-ill patients register at selected practices and modifying chronic disease management software. This will give treating healthcare providers, including specialists and allied health professionals, access to patients’ My Health Records using connected software. Opt-out trials are underway in the Nepean Blue Mountains area and Northern Queensland. The Department of Health says the trials are being conducted to gauge consumer reaction to an opt-out system of participation, as well as looking at healthcare provider use and how much clinical information is uploaded to the My Health Record when most patients have a My Health Record. Federal Health Minister Sussan Ley announced last month that the number of My Health Records in Australia had surpassed four million, with an average of 2,200 new registrations every day in the preceding four weeks. “With changes to the General Practice Incentive, healthcare providers are increasingly contributing and viewing on-line health information about their patients,” Ley said. “We are now seeing one upload of clinical health information from a healthcare provider every 21 seconds.” Ley says that every day, one in five GPs saw a patient for whom they have little or no information but My Health Record would change that. “This may be a Medicare claim or pharmacy prescription, or clinical information uploaded by other healthcare providers such as a specialist, hospital and pharmacy,” Ms Ley says. “With a My Health Record, both a patient and their healthcare professional can gain immediate access to important health information on-line. “This can improve co-ordinated care outcomes, reduce duplication and provide vital information in emergency situations. Ley says My Health Record puts the power in the hands of health consumers to decide who they shared their health information with. Patients can register through MyGov for a My Health Record online and then link the two.   [post_title] => My Health Record: Medics speak up [post_excerpt] => Prescription for change. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 24703 [to_ping] => [pinged] => [post_modified] => 2016-08-16 09:49:15 [post_modified_gmt] => 2016-08-15 23:49:15 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=24703 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 8 [filter] => raw ) ) [post_count] => 2 [current_post] => -1 [in_the_loop] => [post] => WP_Post Object ( [ID] => 27766 [post_author] => 670 [post_date] => 2017-08-07 11:50:50 [post_date_gmt] => 2017-08-07 01:50:50 [post_content] =>
[caption id="attachment_27770" align="alignnone" width="300"] You create a lot of healthcare data during your life. What happens after it? Tewan Banditrukkanka/Shutterstock[/caption] Jon Cornwall, Victoria University of Wellington Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty. Data about patients is a vital cog in the provision of efficient health services. Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.
Read More: Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model
Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. When you died, your records were either shredded or erased, depending on the technology. But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction. Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value. This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment. These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed. Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create. So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country. Yet the lines become easily blurred. Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used? How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer. [caption id="attachment_27771" align="alignnone" width="300"] Every time you visit a doctor’s office, you create data. Keith Bell/Shutterstock[/caption]

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent. As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear. In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for. Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.
Read More: Human embryo CRISPR advances science but let’s focus on ethics, not world firsts
It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics. Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved. The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects. She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted. Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility. At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world. It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised. The ConversationHealthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised. Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington This article was originally published on The Conversation. Read the original article. [post_title] => Healthcare records: take them to the grave? [post_excerpt] => Our healthcare records outlive us. It's time to decide what happens to the data once we're gone. [post_status] => publish [comment_status] => open [ping_status] => open [post_password] => [post_name] => 27766 [to_ping] => [pinged] => [post_modified] => 2017-08-07 15:08:17 [post_modified_gmt] => 2017-08-07 05:08:17 [post_content_filtered] => [post_parent] => 0 [guid] => http://www.governmentnews.com.au/?p=27766 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [comment_count] => 0 [current_comment] => -1 [found_posts] => 2 [max_num_pages] => 1 [max_num_comment_pages] => 0 [is_single] => [is_preview] => [is_page] => [is_archive] => 1 [is_date] => [is_year] => [is_month] => [is_day] => [is_time] => [is_author] => [is_category] => [is_tag] => 1 [is_tax] => [is_search] => [is_feed] => [is_comment_feed] => [is_trackback] => [is_home] => [is_404] => [is_embed] => [is_paged] => [is_admin] => [is_attachment] => [is_singular] => [is_robots] => [is_posts_page] => [is_post_type_archive] => [query_vars_hash:WP_Query:private] => 02e0c4db72d53ea94c21a7286417a48b [query_vars_changed:WP_Query:private] => 1 [thumbnails_cached] => [stopwords:WP_Query:private] => [compat_fields:WP_Query:private] => Array ( [0] => query_vars_hash [1] => query_vars_changed ) [compat_methods:WP_Query:private] => Array ( [0] => init_query_flags [1] => parse_tax_query ) )

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