Last week, at the final meeting of the My Health Record Expansion Program steering Group, we spoke about trust. Or better, the lack of trust people have in big databases, governments in general and many other institutions.
This global trend is described by psychologist professor Barry Schwartz, who says:
“(…) the disenchantment we experience as recipients of services is often matched by the dissatisfaction of those who provide them. Most doctors want to practice medicine as it should be practised. But they feel helpless faced with the challenge of balancing the needs and desires of patients with the practical demands of hassling with insurance companies, earning enough to pay malpractice premiums, and squeezing patients into seven-minute visits – all the while keeping up with the latest developments in their fields.
Schwartz says that we seem to respond to any problem with the same answer of sticks and carrots. There is a widespread belief that more and better rules and incentives will solve our woes. There is one issue. Rules and incentives deprive us of the opportunity to do the right thing. They undermine empathy, creativity and the will to figure out what moral right means.
The My Health record offers great opportunities for healthcare in Australia. However, even though 90.1% of Australians now have access to the My Health Record, this cannot be the end of the line. A system that is responsive, has means to listen to users and learn from errors, mistakes and imperfections, is key to an effective and trustworthy digital health solution into the future.
Kindness, care and empathy are an essential part of my job – and everyone else’s. But it’s unlikely that this will ever be translated into key performance indicators or expressed in My Health Record upload percentages, practice incentive payments or MBS fees.
People are inspired by great examples, not by incentives. Above all, most people want to do the right thing. Trust may be a rare commodity these days but it remains an essential ingredient of effective healthcare delivery. It’s common sense, really.
“When I graduated, my medical notes were an aide-memoire to help me treat my patients. When I joined a group practice, I realised that my notes helped my colleagues and me treat our patients. Since computerisation, my notes and health summaries have helped me to write better referrals so that colleagues outside my practice can assist me in treating patients more effectively. Now that I can share an up-to-date health summary on MyHR, I realise that my notes can help my patients to achieve better outcomes from the health system, even when I am not directly involved.”
Five years ago, in 2014, I wrote about OpenNotes because I thought it was a new and fascinating concept. I soon discovered that giving patients access to health records triggered strong emotional reactions: patients loved it and many doctors thought it was one of the scariest ideas ever.
Fast forward to 2019, and about 90% of the Australian population has access to the national My Health Record (MyHR). According to the Australian Digital health Agency over 80% of general practices and pharmacies, 75% of public hospitals, and 64% of private hospitals have registered.
It took a while, but Australia has sorted out most of the digital teething problems. A large part of what doctors do every day – from writing prescriptions to requesting tests – is now recorded and can be viewed by patients, other health professionals and researchers.
This is only the beginning. Secure messaging is one of the next big topics on Australia’s eHealth agenda. By 2022 patients and healthcare providers can communicate and share more health data than ever before via interoperable, secure digital channels.
Nobody is expecting this to be an easy journey, but I’m looking forward to the destination! Welcome to the ‘open era’ of health information.
The end of the My Health Record opt-out period is in sight. Unless the government decides otherwise, next month the vast majority of Australians will have a digital national shared health record. What’s next?
A while ago I saw a patient who was passing through my town, on her way home from Cairns to Sydney. She had been seen at the emergency department in Cairns and was told to visit a GP for follow-up. She had no hospital letter or medical records but with a few clicks I was able to get access to the hospital discharge summary through the My Health Record, which included results of blood tests, ECG and chest x-ray, and I could see what medications were prescribed.
This is a rare example of the benefits of the MyHR; once the system will be used at a larger scale this could become an everyday reality.
The Australian Digital Health Agency (ADHA) says that about 1.14M Australians have opted out and apparently the opt-out rate is slowing down. At the same time others are signing up and there is an expectation, based on the opt-out trials, that many of those who opted out will eventually opt back in.
The Australian My Health Record is a compromise between a consumer record and a clinical record. This means that there will always be people in both camps who are not completely satisfied. Despite everything we’ve come a long way.
Work in progress
The My Health Record, currently in version 9.4.2, continues to evolve. Looking back over the years progress has been slow but significant.
For example, the software is far less clunky these days; accessing a record or preparing and uploading a shared health summary can now be done within seconds; we got rid of the dreadful participation contracts; there is a secondary use of data framework and users can choose to opt-out of secondary use of their data.
It is expected that more pathology and imaging providers will come on board next year and the legal framework will be further adjusted to improve privacy of Australians, including complete deletion of data if people decide they don’t want a record anymore.
According to ADHA over 87% of Australians know about the record and more than 85% of general practice is registered.
It is likely though that this awareness is rudimentary despite hundreds of engagement activities by the agency and Primary Health Networks (PHNs). Most Australians will not be aware that they have control over who-can-access-what in their records and how to change the privacy settings.
The RACGP has held many PHN-based peer-to-peer workshops across the country as well as webinars for general practitioners and staff, and around 2000 people attended – which is a lot but probably not enough. Most non-GP specialists are not yet on board.
Then there are still the concerns about for example privacy, workflow and accuracy, many of which are summarised in this year’s senate inquiry report. It appears there is still work to do.
The next stage
The agency has started preparing for the ‘post opt-out period’. As it stands around mid December empty shell records will be created, and activated once accessed by providers or consumers.
ADHA says the aims of the next stage of the consumer campaign will be maintaining awareness, taking control of the My Health Record and encouraging consumers to discuss the MyHR with providers.
The provider campaign will focus on the expected benefits including improved efficiency, such as less search-time, and better health outcomes – although skeptics will question the latter claim by the agency.
There will also be a focus on getting specialists on board, aged care access, improved family safety and child protection and education for vulnerable consumer groups.
Meanwhile ADHA has released an international review of digital health record systems. The findings show that the Australian MyHR empowers consumers to access and personally control their information, including what’s in it and who can see it.
ADHA emphasised that, although many countries have laws that allow users to view their health information, only Australia and a limited number of other countries allow citizens to control who sees their information and request corrections to their own health data.
The MyHR PR machine is in full swing. It will be interesting to see what the response to the senate inquiry will be and what happens next year. I hope the momentum of recent times will continue.
What needs to change?
From a usability point of view the wow-factor is still missing and although that’s nothing new in healthcare, some work in this area would go down well.
For example, it would improve workflow and safety if doctors could download MyHR information not just as PDF but import new medications straight into a local medication list.
The secondary use of data framework is fairly broad, and could be tightened up a bit further. Many have commented that the messaging around the MyHR should be less promotional and more about benefits versus limitations – but I’m not holding my breath here.
What change do you want to see?
Details have been changed in the case above to ensure patient confidentiality.
It’s often been said, the Australian My Health Record is not a finished project. It is evolving and has, indeed, lots of potential to improve and streamline patient care. Sadly, the privacy issues that have haunted the project for years still seem to be unresolved. And when it comes to secondary use of patient data, there’s more to come from a different direction.
Back in 2013 I wrote this in a blog post about the My Health Record, then called the Personally Controlled Electronic Health Record or PCEHR:
“The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.”
Five years later and there are still ambiguities about when, how and for what reason law enforcement agencies and other non-medical parties can access the national My Health Record system. This should have been crystal clear by now. Here’s is what I posted in 2015:
“(…) at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out. (…) The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians.”
When asked about this issue at yesterday’s Press Club AMA president Dr Tony Bartone indicated that he is prepared to push for legislative amendments to improve the confidence of Australians in the My Health Record.
I was glad to hear this. I’m all for amendments of the My Health Record legislation but at the same time the Department of Health is on a journey to get its hands on GP patient data – and this is unlikely to change.
For example, the Department of Health is preparing a new data extraction scheme, to be introduced in May 2019. To remain eligible for practice incentive payments GP clinics have to agree that de-identified patient data will be extracted from their clinical software by, perhaps, Primary Health Networks. From there the data may flow to, possibly, the Australian Institute of Health and Welfare, the organisation responsible for the secondary use of data in the My Health Record.
If this scheme goes ahead, government organisations will begin to take over data and quality control of general practice. The argument will be that it is in the interest of the health of the nation. Perhaps it’s my well-worn tin foil hat, but I have a sneaking suspicion what I will be blogging about in the years to come.
Consent for secondary use is implied if consumers don’t opt out of the MyHR. In other words, people need to take action if they don’t want their health data to be used for purposes other than direct clinical care.
To stop information flowing to third parties, consumers will have to press the ‘withdraw participation button’.
Another hot topic is the use of the data by commercial organisations which, interestingly, is permitted under the framework, provided it is ‘in the public interest’.
And, as expected, one of the main purposes of secondary use is the monitoring of outcomes of care. It remains to be seen what this will mean for the interaction and relationship between consumers and health providers.
The release of data is expected to commence from 2020.
A ‘My Health Record secondary use of data governance board’ will assess applications for access to MyHR data ‘based on the use of data, not the user’.
Any Australian-based entity, except insurance companies, can apply to get access to the data. The board will take a ‘case and precedent’ approach to determining what uses will be permitted and not permitted for secondary use.
Although information in the MyHR cannot be used for commercial purposes, such as direct marketing to consumers, data may be released to commercial organisations if they can demonstrate that the use is consistent with ‘research and public health purposes’ and is likely to be ‘in the public interest’.
I suspect that this backdoor will be in high demand by third parties such as the pharmaceutical industry.
The board can permit the linkage of myHR data with other data sources once the applicant’s use is assessed to be of public benefit. In an example provided in the framework, researchers link MyHR information to a database of clinical trial participants to investigate hospitalisations, morbidity and mortality.
Data may also be linked to other datasets such as hospitals, MBS, PBS and registry data.
The framework gives examples of the use of health data for secondary purposes, including:
Evaluation of health interventions and health programs (e.g. determine if an intervention or service is generating outcomes/benefits consistent with funding approvals)
Examining practice variations for the purposes of quality improvement or adherence to best-practice guidelines at a health service level
Construction of clinical registries (e.g. create or supplement data in clinical registries to evaluate the effectiveness of interventions)
Improvement of existing health services and development of new services
Enhancing post-market surveillance insights for new products
Improvements to patient pathways research
Increased visibility and insights into population health matters
Development of government health policy
Develop/enable technology innovations
Preparation of publications
Recruitment to clinical trials (e.g. identify people who may be suitable for a new product/service)
Development of clinical decision support systems (e.g. link data on individual’s health with best practice to influence treatment choices)
Health services research relevant to public health (e.g. examine the health service utilisation patterns for potentially avoidable hospitalisations; research that leads to changes in other government policies, such as welfare, and ultimately reduces impact on the health system).
A review will be performed after two years, which may identify additional uses.
The following uses of MyHR data are not permitted:
Determination of funds allocation for a health service (e.g. set the level of funds allocated to an individual community health service)
Remuneration of individual clinicians (e.g. to make/modify payments)
Individual clinician audit (note: this does not exclude examining practice variations for the purposes of quality improvement or adherence to best-practice guidelines at a health service level).
Direct marketing to consumers
Assessment of insurance premiums and/or claims
Assessment of eligibility for benefits (e.g. use by Centrelink and/or the Australian Taxation Office to make determinations relating to an individual)
Criminal and/or national security investigations, except as required by law (e.g. use to investigate the interactions of individuals with the health system as part of assessing their behaviour).
Data that has been removed or classified by consumers as ‘restricted access’ will not be retrieved for secondary use purposes. Similarly, when people cancel their MyHR record, the data will no longer be used.
Consumers can stop their data being used for secondary purposes by clicking on the ‘withdraw participation button’. It is expected that a dynamic consent model will be introduced later, which allows consumers to give consent for secondary use on a case-by-case basis (which would also open the door for the use of identified data).
In the light of the recent Facebook Cambridge Analytica Scandal I suspect that many consumers will press the button – or will be advised by health professionals to do so.
By the end of the year Australians will have an online digital health record, unless they opt out of the system. The details of the move towards opt-out will be released soon.
The Australian Digital Health Agency (ADHA) is ramping up its activities to prepare for the change to opt-out. The large-scale operation will involve extensive stakeholder engagement, a nation-wide communication and advertising campaign and increased support for consumers and clinicians.
For consumers who have not opted out at the end of the defined three-month period later this year, a My Health Record (myHR) will be created. The record will be activated when used for the first time by consumers or clinicians.
Staff levels of the call centre – transferred from the Department of Health to ADHA – will increase from thirty to two hundred and will operate around the clock during the opt-out period.
The record will initially be empty apart from two years worth of retrospective MBS and PBS data. Consumers have the option to remove this data.
Pathology and imaging reports are uploaded into the MyHR one week after the test date. Some sensitive tests, such as HIV, may not be automatically uploaded depending on the various State or Territory legislation.
Clinicians and consumers will have the opportunity to stop the upload of results and other reports if desired. Consumers can restrict access to or remove reports from their MyHR.
No stone left unturned
No stone has been left unturned in finding ways to make Australians aware of their right to opt out: a wide scale advertising campaign will use various media including radio, social media, billboards and cinemas.
Materials such as waiting room brochures, tear-off pamphlets and reception cards will be made available to providers. Medicare will be sending out brochures to Australians. Consumer organisations have been engaged to help with awareness.
It is expected that the adoption and active use of the MyHR will vary across Australia as a result of the availability of already existing digital health solutions in various states and regions.
For example, in areas where discharge summaries are not always easily made available by hospitals, the uptake of the MyHR may be higher.
Currently there are about twenty million Australians without a MyHR. Based on the trials it is expected that only a small percentage, about 2%, will opt-out.
It looks like the opt-out procedure will be relatively simple and can be done via an online self-service portal or by phone through the help desk. Hard copy opt-out and ‘election-to-not-be-registered’ forms will also be available through post-offices, and will be made available to hard-to-reach populations.
Although care has been taken to make sure there is no coercion not to opt-out, those who do will receive a notification that their medical information may not be accessible during emergencies. They will also be asked to give a reason after they have opted out.
The MyHR website will shortly contain information about the opt-out procedure. It is also expected that the FAQ section will be expanded to assist consumers in making a well-informed decision.
Risks and challenges
The MyHR offers clear benefits as clinicians will have increased access to information such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.
However, every digital solution has its pros and cons. It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website.
Behind the scenes however, risk mitigation has been one of the priorities of ADHA. This obviously includes the risk of cyber attacks and public confidence in the security of the data.
Another challenge for ADHA will be to manage expectations – before, during and after the opt-out period. The reality is that the MyHR is not a be-all and end-all, and is still on a development journey.
As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far ADHD nor the Department of Health have been able to get this group on board. The usual promotional material, touting benefits, is unlikely to change anything. A more effective approach would involve addressing the concerns, issues and perceived obstacles.
Primary Health Networks (PHNs) will assist in spreading the message. The PHNs involved in the opt-out trials reported high levels of success in engaging providers.
Other parties including the Royal Australian College of General Practitioners (RACGP) will provide peer-to-peer education, which may help to balance the message, address some of the concerns and manage expectations.
Edwin Kruys is a member of the My Health Record expansion program steering group.
The information in this blog post is intended for informational purposes only. It may not be complete and is subject to change. Please refer to offical ADHA sources for MyHR updates.
There’s a Dutch theory called ‘De wet van de remmende voorsprong’ which, according to Wikipedia, translates as ‘The law of the handicap of a head start’. The theory suggests that an initial head start by an individual, group or company often results in stagnation due to lack of competition or growth stimuli. This may eventually lead to losing pole position.
General practice was one of the first fully digitalised, more or less paperless, medical disciplines in Australia. The question is, are GP software packages keeping up with the times or is the profession at risk of falling behind and being overtaking by others?
Overall I am satisfied with the desktop software I use to look after my patients. It does the basics very well such as recording patient demographics and medical history, medication management, printing scripts and investigation referrals.
It also checks if medications agree with each other and if the patient happens to be allergic to a new pill I am about to prescribe.
But compared to, let’s say, ten years ago there haven’t been any breakthrough innovations. Sure, we can now check the national My Health Record and upload a shared health summary, but there’s also a lot to wish for.
We’re still relying on the good old fax machine and over the years I have seen more and more third-party software solutions appear on our system to perform tasks the desktop software can’t. Occasionally these packages clash with each other or slow the practice system down.
The wish list
Here’s a list of 7 basic things that should be included in all GP desktop software. I believe it would improve patient care and satisfaction.
I’d love to have the option to communicate securely with patients and other providers, asynchronously or via video link.
Our patients should be able to send digital health data or electronic script requests via a secure connection.
An online appointments booking system.
GPs should be able to send scripts electronically to the pharmacy.
It would be really nice if the software would help us to write (and send) smart electronic referrals by automatically inserting the data required by the specialty or provider we are referring our patients to.
Data is like garbage, you’d better know what you are going to do with it before you collect it ~ Unknown
It took a while, but the Department of Health is now inviting submissions about the various ways digital health information in the national My Health Record (MyHR) should, and could, be used.
By law information in the MyHR can be collected, used and disclosed ‘for any purpose.’ This ‘secondary use’ of health data includes purposes other than the primary use of delivering healthcare to patients.
The consultation paper is not an easy-read and I wonder how many people will be able to make heads or tails of the document – but then again it is a complex subject.
Nevertheless, secondary use of health data seems to make sense in certain cases. As the paper states:
“Secondary use of health data has the potential to enhance future healthcare experiences for patients by enabling the expansion of knowledge about disease and appropriate treatments, strengthening the understanding about effectiveness and efficiency of service delivery, supporting public health and security goals, and assisting providers in meeting consumer needs
Risks and red flags
There are risks. For example, I would be concerned if insurance companies or the pharmaceutical industry would get access to the data or if the information would not be de-identified.
The consultation paper also mentions performance management of providers, and driving ‘more competitive markets’. These are red flags for many health providers because there is little evidence these purposes will benefit patient care.
For example, performance management has gone wrong in the British Quality and Outcome Framework pay-for-performance system and has resulted in:
only modest improvements in quality, often not long-lasting
decreased quality of care for conditions not part of the pay-for-performance system
no reduction of premature mortality
loss of the person-centeredness of care
reduced trust in the doctor-patient relationship
loss of continuity of care and less effective primary care
decreased doctors morale
billions of pounds implementation costs
According to the consultation paper it is ‘not the intention’ to use MyHR data to determine remuneration or the appropriateness of rebate claiming by healthcare providers.
Interestingly, a similar discussion is currently happening around the changes to the quality improvement incentive payments (PIP) to general practices and the proposed requirement to hand over patient data to Primary Health Networks without, at this stage, a clear data framework.
Research & public health
It seems reasonable to use the information in the MyHR for research or public health purposes with the aim to improve health outcomes. The access, release, usage and storage of the data should obviously be safeguarded by proper governance principles.
A good idea mentioned in the paper is a public register showing which organisations or researchers have requested data, for what purposes, what they have found by using the data and any subsequent publications.
I hope the MyHR health data will never be used for e.g.:
The My Health Record is far from perfect but still has much to offer. Unfortunately it has an image problem and its value proposition will need to be clearly communicated to health professionals. There are also several loose ends that need fixing, such as workflow challenges and the medicolegal issues around uploading and accessing of pathology and diagnostic imaging reports.
Knowing exactly what MyHR data will be used for and by whom will be an important factor for many in deciding whether to participate and at what level. ‘Where did our health data go?’ is a question health professionals and consumers should never have to ask.
You can complete the public survey here. Submissions must be received no later than midnight Friday 17th November, 2017.
It looks like we’ve entered a new chapter in the Australian digital health story. After several rocky episodes it seems the force is with us and Australia’s digital health record system is on the road to recovery. At the same time there are challenges ahead.
When it comes to the national electronic My Health Record (formerly PCEHR) there is no shortage of scepticism among health professionals. Many have disengaged after unsuccessful encounters with earlier clunky versions of the system.
A lot of work has been done to make the interface easier to use. Accessing the system and uploading a shared health health summary has now become a fairly simple process – as it should be.
Towards opt-out in 2018
The My Health Record will get a massive boost in the middle of 2018 when the system changes to opt-out. Currently Australians have to actively sign up if they want a digital shared health record but next year every Australian will have a record – unless they opt out.
The strategy outlines plans between now and 2022 for secure messaging between providers and with patients, telehealth, interconnectivity and interoperability, electronic prescribing and dispensing, test beds for new digital health technologies, development of health apps & tools and workforce training and upskilling.
The Australian Digital Health Agency (ADHA) has indicated it wants to co-design an implementation framework with the broader healthcare sector.
ADHA CEO Tim Kelsey said on Norman Swan’s RN that it is not just another strategy document: “I want to reassure people that this is going to be about delivery and people should hold me and the agency to account for delivering actual real benefit.”
Kelsey also admitted that at the moment the My Health Record doesn’t have as much clinical value as most doctors would want, but that a record of dispensed PBS medications is currently available. More clinical content will be coming soon, such as radiology and pathology.
The strategy document acknowledges some of the issues doctors have with regards to security, safety and use of the data: “They [doctors] need assurance that the digital systems they use support them to meet their obligations to keep their patients’ health information secure and private, and that health data will be used safely and appropriately to improve patient outcomes.”
Doctors have also voiced concerns about the medicolegal risks that come with accessing a patient’s My Health Record, for example when diagnostic tests and images will be available that may not have been reviewed and actioned by the requesting clinician. Clear guidance is required on how the reports are to be handled and who is responsible.
Most clinicians will not have an issue with de-identified data in the My Health Record being used for research or public health purposes, but transparency around secondary use of data will be welcomed and would encourage engagement with the system.
Uploading of shared health summaries is happening in general practice but concerns have been raised about the quality of some of the data. The current incentive payments seem to encourage volume. However, if the uploaded clinical content is not useful, others may not engage or upload data from their end. A classic case of the chicken and the egg.
It seems the Australian Digital Health Agency has sorted out many of the governance issues and is becoming a more transparent, engaging enterprise. An effective implementation strategy will genuinely address the barriers to engagement with the MyHealth Record and not just sprout benefits. I believe there is hope for Australia’s digital health record.
When I got back from a family camping trip this month I noticed the government had made important eHealth announcements shortly before Christmas Day. In summary, the news was that the government is going ahead with its plans, despite objections from the RACGP, AMA and others.
Practices will miss out on their IT support payments if they don’t upload patient health summaries to the PCEHR (now called MyHealth Record). These IT support payments were originally introduced to make sure practices have up-to-date computer systems.
The Department must have known that GPs are usually not employed by practices and that most are ‘contractors’. This effectively means that they run their own independent businesses within a practice. Stopping payments to the practice does not directly affect their hip pocket unless they own the practice.
This seems to be bad news for business owners. The strategy could affect the quality, safety and security of the medical IT systems – which is not good for patient care. The question is: will doctors be using the eHealth system more often as a result of this change?
The wrong tool
Dr Nathan Pinskier, chair of the RACGP expert committee for eHealth and Practice Systems was quoted in Australian Doctor magazine saying: “Practices can’t compel GPs to upload these health summaries. So the practice faces losing the whole payment. [The government] is using the wrong tool. If you want to fund GPs to do this work, then think about a separate MBS item number.”
Some of the responses from doctors to this article give a rough idea of what the general opinion seems to be:
“I will not participate in this ill-considered e-health scheme until the legislation catches up to make the e-health record ‘fit for purpose’ as a clinical tool for clinicians and not just as a data mine for Government auditors.”
“All this decision does is confirm that Ms Ley and Dept of health with their rhetoric of conciliation and discussion in consultation with primary care are nothing but a load of lies and an insult to primary care.”
“Then there will be all the vultures, like insurance and finance companies, who will start circling, seeing getting access (by a degree of sophisticated patient blackmail) to this information as a great cheap way of getting what they want without having to pay us for a report.”
“The daily GP practice number median (50% more, 50% less) is 40 patients a day (Medicare data). That is a practical average of 8 – 10 minutes a patient. If accessing, discussing, uploading adds an extra 5 minutes a patient, that will be a reduction in bulk billed cash flow of 33%. Overheads will remain the same. Can you afford it?”
Judith Sloan, economics journalist at The Australian Newspaper, wrote: “It’s a type of childlike optimism – the idea that governments can achieve lots of good things through the creation of large-scale, all-embracing information technology platforms.”
“(…) But rather than ditch what is an incredibly wasteful commitment of taxpayer money, the current government has decided to press on and switch from an opt-in arrangement to one in which patients are forced to have a PCEHR unless they object.”
Dr Pinskier in Australian Doctor magazine: “We have a view that there is a role in the 21st century for a consumer health record. But it’s unclear to doctors whether the MyHeath record is a consumer record, a clinical record or hybrid.”
“(…) It is still unclear what real purpose it serves. (…) It was a good idea a decade ago but now we have cloud-based technologies. We are moving away from Big Brother data systems. Is [the MyHealth system] still relevant?”
The AMA has also indicated that it’s unhappy about the changes to the eHealth incentive structure. In the meantime, opt-out trials are being prepared, which are another attempt to push health consumers and practitioners into using the heavily criticised system.
The other issues we can of course expect is that the targets will be increased but the incentive payments to practices will decrease over time. Not something to look forward to in the current climate of Medicare rebate freezes.
There are oncerns about the secondary use of the data in the record as well as excessive penalties for health providers. Monash University researcher Juanita Fernando recently wrote in a response on this blog: “As we have known for some time, the MyHR legislation explicitly allows the data to be used for reasons other than health care. GPs have seemed to be blissfully unaware that their own medical records may legitimately be accessed by any and all of their peers or colleagues.”
“Under the current MyHR ‘opt-out’ paradigm, everyone will actually have a record created, even if they opt out, only it will be ‘hidden’ on opt out. The security of this hidden record is not guaranteed. We seem not to have the option to have it not created.”
Secondary use of data, or the use of patient health information for purposes other than clinical care, is usually not the first thing people think of, but the recent revelation that over 60 organisations, including AHPRA, have applied to access our metadata for various reasons, is a reminder that this could be reality soon.
What the College says
RACGP President Dr Frank Jones said in a senate submission: “Penalties which may be applied for the misuse of MyHealth Record appear excessive and unnecessary and will greatly deter use by busy general practitioners. Provisions for penalties already exist within the Australian Privacy Principles so it is not clear why there is a need for additional penalties, civil or criminal, to be imposed.”
As everybody knows, the main thing that has been missing all along is genuine engagement with GPs. The RACGP submission to the Medicare Benefits Schedule (MBS) Review Taskforce hit the nail on the head and the government would do well to heed this advice:
“Meaningful engagement between the Federal Government and the healthcare sector is needed to address these issues and for myHealth Record to be successfully adopted.
The submission continued: “Meaningful use of MyHealth Record relates to safety, quality, communication and healthcare outcomes – not data collection. Characterising myHealth Record as a data source rather than a tool to support clinical practice is of concern to GPs, who will be the primary users of the system (…).”
All in all I’m becoming less and less optimistic about the future of the national e-health database, and it seems I’m not the only one. There are many alternatives but sadly the government is pushing ahead and, whether it does so on purpose or not, it seems the project is sadly getting closer to the edge of that big, overhanging cliff. The analogy with lemmings comes to mind.
I recently participated in a webinar organised by the Department of Health. It was supposed to be a consultation about the uptake of eHealth.
It went something like this: “We want to gain feedback from GPs about how we can get you to use the eHealth. This is how we’re going to do it; we’ve already organised training and we’re kicking off after the Christmas break. But before we start this session you must know that we cannot consider other options or timeframes.”
I was speechless. Literally – as I was not allowed to speak. I could only send little text messages via the closed online question platform. I was unable to see the feedback from other online participants.
For years health providers have repeatedly said, if you want to make eHealth a success please take us with you.
The government is talking about new incentive payments to practices, ‘refreshed’ training programs and opt-out instead of opt-in, but there is little mention about improvements that make health providers want to use the PCEHR (now called ‘My Health Record’).
It is concerning is that the current plan mainly encourages uploading of documents. What should be facilitated is safe and more efficient care for our patients. At the moment it seems to be all about the number of uploads to the system. I cannot help but wonder what higher level performance indicators are at work here.
Any incentive has to be effective at provider level to create behavioural change. In other words, we must encourage individual practitioners to use eHealth, not just organisations and practices.
It is no surprise that the government failed again to enlist support from the profession. In its submission to the Department of Health, the RACGP wrote:
“(…) the RACGP cannot support the proposed mandatory requirements for the uploading of a specified quota of clinical documents to My Health Record. Meaningful use is not just uploading information to My Health Record, and nor is uploading information an acceptable starting point for meaningful use. Meaningful use relates to safety, quality, communication and healthcare outcomes – not merely numbers.
E-health experts have warned that the system is still unsafe. For example, some software programs merge medication dose and instructions. Others have warned that the uploaded clinical information does not always arrive in the My Health Record database.
Then there are the unanswered medicolegal issues. As I said in MJA Insight, I would be happy if the data in My Health Record was used for other purposes such as disease surveillance or even feedback on my clinical management but, in the end, it is the patient’s record and they must have a say in it. A proper consent procedure is essential for any use of PCEHR data outside individual patient care.
It appears the system operator is currently authorised to collect information in individual health records for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law. This process should be more transparent with a better explanation of what it means for both patients and providers.
Removing the need for provider participation agreements is needed as these documents are very one-sided. It is not clear to me what this will mean for the liability of organisations, practices and individual practitioners.
A failing strategy
It is challenging to have a discussion about incentivising uptake of eHealth when there are so many unknowns. It’s like trying to sell a house that’s still being built and everyone knows there are construction issues. Pushing people to live in the house does not make it a safer or a better building.
The RACGP warns against hastily implementing incentives and advises the department to wait for the outcomes of the Primary Health Care Advisory Group review, the MBS review, and the opt-out trials which are due to start.
Once the identified problems with My Health Record have been addressed and resolved, the RACGP believes that uploading of patient information to My Health Record would be best supported by a practitioner incentive payment (SIP) or an MBS rebate.
It will be interesting to see the response from the department. I’m afraid that history will repeat itself: they’ll go full steam ahead, only to discover in one or two years time that the strategy didn’t work. What do you think?
This is good news. Doctors and patients are often confused about the rules regarding the collection, use and disclosure of information on a PCEHR.
An example of ambiguities includes doctors being advised not to use PCEHR data when providing third-party reports. But what happens to PCEHR information that, over time, has been incorporated in local databases? And are doctors allowed to access a PCEHR in the patient’s absence?
What’s the purpose?
This lack of clarity reflects a bigger problem — the absence of a clearly articulated and shared goal underpinning the national e-health system.
In the absence of an agreed purpose, rules and systems can become arbitrary or misguided, restrictive and lacking in consistency. Doctors, patients and policymakers first need to agree on the main purpose of the PCEHR.
Ultimately it is a tool intended to improve the provision of care: patients disclose their personal data to doctors and, in return, receive more effective and personalised care. I would be happy if the data were used for other purposes such as disease surveillance or even feedback on my clinical management but, in the end, it is the patient’s record and they must have a say in it.
A proper consent procedure is essential for any use of PCEHR data outside individual patient care. It appears the PCEHR system operator is currently authorised to collect information in individual PCEHRs for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law.
This should be more transparent with a better explanation of what it means for both patients and clinicians.
Patients should also understand the pros and cons of setting advanced access controls, especially now an opt-out system is on the cards. Adequate support will be required for specific groups including the elderly, people with a disability or mental illness, and some 14–17-year-olds.
The right to be forgotten
At the moment, PCEHR data are required to be held for up to 130 years. An interesting concept to consider is the “right to be forgotten”, which has been introduced in the European Union Court of Justice to give people the right to remove data from search engines under specific circumstances.
This concept is applicable to e-health. Patients, for example those with a mental health diagnosis early in life, may want to have part or all of their PCEHR record erased at some point (not just deactivated) to avoid stigmatisation or other repercussions — rather like the expunging of juvenile criminal records to give young people a fresh start.
Liabilities & incentives
Removing the need for participation agreements seems like a good idea. The Department of Health proposes that the liability provisions in the agreements be disposed of, rather than transferred to the legislation.
It is unclear what this would mean for the liability of doctors and health care organisations.
It seems new incentives will be paid to doctors who upload records to the PCEHR on behalf of patients with care plans. Although this will be welcomed by most doctors, it excludes other patients who don’t have a care plan but who would also benefit from a PCEHR.
Linking payments for chronic disease management to the uploading of documents is complicated. If it is introduced without other improvements to the PCEHR system, it could create more resentment among doctors and may lead to poor-quality uploads
What happens if patients do opt out of the PCEHR? Will their doctors be paid less to look after them?
And what if a patient who would benefit from a PCEHR declines to have a care plan, or the doctor provides chronic care without creating care plan documents or health assessments? In that case, there would be no incentive for the doctor to upload data to the PCEHR.
An upload incentive across the board would avoid these issues.
More criminal penalties?
The government is also considering introducing more criminal penalties, including jail terms, additional to the monetary civil penalties that already exist for data breaches. If we want to increase participation and engagement by doctors, I’m not sure that more penalties will help.
The challenge is to make e-health an integral part of health care, and align its purposes and values with usual clinical practice.
Training & education
Astronomer Carl Sagan said: “We live in a society exquisitely dependent on science and technology, in which hardly anyone knows anything about science and technology.” If e-health is to succeed we need to invest in information and communication technology skills. We must train the next generation of e-health designers, builders, managers and users to ensure our e-health system is safe and effective.
This article has previously been published in MJA Insight. Many thanks to Ms Jen Morris, Dr Karen Price and Dr Michael Tam for their valuable feedback and suggestions on the draft of this article.
There were a few interesting tech news facts this week. I thought this one was interesting: a Dutch campaign group used a drone to deliver abortion pills to Polish women, in an attempt to highlight Poland’s restrictive laws against pregnancy terminations.
There was scary news too: a private health insurer encouraged its members to use a Facebook-owned exercise app to qualify for free cinema tickets. Not surprisingly, Facebook was entitled to disclose all information shared via the app, including personal identity information, to its affiliates.
But there was also this: Telstra has launched its ReadyCare telehealth service. For those willing to pay $76, a doctor on the other end of the phone or video link is ready to care for you. No need to visit a GP or emergency department.
The telecom provider will offer the service to other parties like aged-care facilities and health insurance funds. Telstra is aiming for a $1 billion annual revenue.
Digital developments increasingly create new opportunities, challenges and risks, but we have yet to find ways to incorporate the new technologies in our existing healthcare system.
In an interview in the Weekend Australian Magazine Google Australia boss Maile Carnegie warned that the digital revolution has only just started and that Australia is not ready for the digital challenges ahead.
Carnegie said that 99% of the internet’s uses have yet to be discovered and although Australia is the 12th largest economy in the world, it ranks only 17th on the Global Innovation Index.
She said that Australia has become a world expert at risk-minimisation and rule-making. Unfortunately this seems to slow down innovation.
“We are either going to put in place the incentives and the enablers to create the next version of Australia as a best-in-class innovation country or we’re not,” she said. “And I think it’s going to be a very stark choice that we have to make as a community.”
Who’s taking the lead?
In the last ten years we have seen major progress in for example mobile technology, but my day-to-day work hasn’t changed much. Healthcare has difficulty harnessing the benefits of the digital revolution.
Is the industry leading the way and letting governments, software developers and other parties know what is required? Do we have industry-wide think tanks to prepare for the near future? Have we listened to what our patients need and expect from us in the 21st century?
In the 2015 Budget the Federal Government has allocated significant funding to improve the electronic health record system for all Australians. The personally controlled e-health record gives patients a lot of control, but many healthcare providers are still concerned about the medicolegal risks embedded in the system.
I had the privilege to speak with Dr Steve Hambleton, former AMA president and Chair of the National E-Health Transition Authority (NEHTA), about some of the concerns voiced by doctors and consumers.
It appears there are various sticks and carrots in the pipeline to get more healthcare providers on board, but there is no sign that for example the heavy-handed PCEHR Participation Contract for providers will be changed.
The good news is that Dr Hambleton expects the current national infrastructure will help other providers and products – different to the PCEHR – to emerge in the near future.
Here is the transcript of our conversation:
Are you enjoying your role within NEHTA?
“I think I am now!”
I assume you are happy with the allocated funding of $485 million for e-health over 4 years in the latest budget?
“Yes absolutely. I think it does two things: It restarts the momentum of e-health in this country, and the Federal Government has now sent a signal to the State Governments and the e-health community saying: ‘we are serious about e-health and we want to get an outcome; we want to get some returns.’ If you think about it, we’ve really had no momentum since about September 2013.”
The budget indicated that NEHTA will cease to exist as suggested in the Royle report – what will your role be after the transition?
“I hope to be able to contribute in some way, but there are no announcements about it as yet. NEHTA can now complete its task of setting up the infrastructure and I guess the Australian Commission for E-Health, if it goes forward as proposed, can take it to the next step of more meaningful and better use of e-health.”
What is the difference between NEHTA and the proposed Australian Commission for E-Health?
“I think the main difference will be in the governance, not so much the strategic direction. We recommended in the Royle review to put users and people who can meaningful influence the direction of e-health on the governance board, so the influence is there at the highest level.”
According to the PCEHR Act 2012 the PCEHR has four purposes: to help overcome fragmentation of health information, improve the availability and quality of health information, reduce the occurrence of adverse medical events and the duplication of treatment, and to improve the coordination and quality of healthcare provided to consumers by different healthcare providers.
It appears however there are least 5 other purposes of the PCEHR spread out throughout the Act:
Law enforcement purposes
Health provider indemnity insurance cover purposes
Public health purposes
Other purposes authorised by law
Especially the last one seems a catch-all category. There seems to be a lack of information about what happens with our patients’ health information in the PCEHR. What are your thoughts on this?
“We should probably engage with the minister now to gain a better understanding of where they want to go with e-health, but if we simply mechanise what we’re doing with paper records we really can’t reach the benefits of electronic health. We have to analyse the data we’re creating and use that to improve care and understand outcomes.”
“For example, when a new drug is released into the community we want to know: does it actually deliver the same outcomes as when the drug trials were run? We need to make sure that the healthcare we are providing does make a difference and does get an outcome, so we do need to analyse the data. Whichever way we go, the performance of the system is going to face more transparency as time goes on, and I think the profession is beginning to understand that.”
“We need to analyse individually what we do in our practices; all the colleges are now saying: ‘as part of continuous professional development we want you to reflect on your activities within your practice and show us how you modify your activities to get a better outcome.’ That will apply to GPs, specialists, hospitals, and the systems need to be analysed as well. We can’t do that unless we have a common dataset and I think that’s what e-health gives us.”
We need more information about what the government will and won’t do with the data because the PCEHR act 2012 seems to allow for almost anything.
“I think that’s probably a question we should put to the minister. We need to hear what’s in their heads. I don’t have any knowledge about what’s in the government’s mind.”
The data is kept by the government for 130 years, is that right?
“My understanding is that’s correct yes.”
Do you think patients are aware of this?
“I can’t answer that question, I couldn’t tell you what patients are thinking but certainly from the day-to-day interaction with patients it’s surprising to see how many people think we’re already sharing information about them and use that to try and improve the situation.”
Even if healthcare organisations or practices cancel the PCEHR Participation Agreement, 7 of the 14 clauses contain paragraphs that survive termination, including liability. Although practices may have signed up to access the incentive payments, they may be concerned about the fact that the contract has clauses that, once signed, will be perpetually binding.It makes sense to adjust the contract to entice clinicians to participate, doesn’t it?
“My comment would be that we’re bound by good medical practice in any case, no matter what we do in relation to our patients. Decisions that we make are expected to be in their best interest. And putting my AMA-hat on, our interaction with e-health should be no different and shouldn’t require any different concept than when we are interacting with patients in other ways.”
“E-health is a different way of interacting and recording data and I guess that’s why we’re well-educated and insured and act in the patient’s best interest. If you look at good medical practice and say well that’s the guidance that we’re all subscribe to, than this should apply to any interaction including e-health.”
But 130 years seems like a long time.
“We’re expected to keep paper records for a period of time and every time I try to get information about this, you know, nobody will give you a clear answer when you can dispose of them. Theoretically it might be seven years since you last used them but if you talk to a medical defence organisation they say: ‘well if you keep them longer that would be good.'”
“I’ve got electronic health records in my practice dating back to 1995 and you wouldn’t think of destroying any of those. I think it’s one of those areas that you think: is this information permanent? I mean, in 130 years is it going to be in a form that’s usable? I guess it’s one of these things we don’t know the answer to.”
How do we get doctors to use the PCEHR?
“Doctors have been sitting back asking: ‘well why should I engage with e-health when it’s not certain if the government is actually going to support it?” There has been a lot of uncertainty. We now have a strong signal from the government that e-health has a future and that we have a national infrastructure that we’re going to use.”
“Then we need to say to doctors: ‘well what is the benefit here?’ The primary beneficiary is the patient. The information collected that they can manage will provide the next doctor they see with accurate and up-to-date information. Specialists and public hospitals can get quick access to the curated information.”
“The reality is it’s going to make our lives easier and make our search time shorter and provide us with rapid access to accurate information. Opt-out ofcourse means that when you look for a PCEHR there’s one there; if the patient has been in hospital there will be a discharge summary; if you want to upload something it’s not complicated and you don’t have to sign people up. It will be more efficient.”
The budget mentioned revised incentives, can you tell us more?
“Nothing specifically, but I have no doubt that the practice incentive payments program will look at incentivising doctors to use electronic health records. Their software has to be SNOMED compliant, they need to have secure messaging protocols and be able to send messages between doctors and patients and utilise the e-health infrastructure. I think that’s going to happen.”
A problem with practice incentive payments is that they go to practices, not to doctors who are interacting with the PCEHR.
“It depends on how practices have set themselves up but you’re quite right. The Royle review recommended that there should be a link between annual health assessments, care plans and utilisation of e-health. This would be a direct reward for doctors if they interact with the e-health infrastructure. The government has indicated that it is going to try and implement the major recommendations of the Royle review.”
GPs could interpret a link between care plans and e-health as the government forcing them to use the PCEHR, because if they wouldn’t their income drops.
“It is by no means a definite outcome. It is something the PCEHR review commission thought would be worthwhile. The Primary Health Care Advisory Group [of which Dr Hambleton is chair as well] will consult with senior members of the profession to see what they think. I think it is pretty clear that people with high needs and chronic diseases would benefit from better electronic communication.”
I agree that certain people with chronic diseases could benefit from e-health. Many GPs however are weighing up their own risks of participating against the benefits to their patients, and that’s where some of the concerns come from.
“Yes, I think we should all look at issues like that. I suppose we will be looking to our indemnity providers to give us some guidance. The AMA has put out a guide for the use of the PCEHR which gives pretty good guidance. But if e-health reduces the risks for our patients and improves the care to our patients everybody is going to support it; if it does the opposite then they won’t.”
“I just want to make one more point. We focus on the PCEHR, and I understand why, but so many people have called me out and said: ‘we’ve spent a billion dollars on the PCEHR!’ but actually we haven’t. The national infrastructure that underpins the PCEHR is really critical for a successful e-health strategy.”
“Think about the individual health identifier, the individual practitioner identifier, practice identifier, SNOMED CT, Australian medicines terminology, secure messaging protocols and also a national product catalogue plus a national health services directory.”
“All of this basic infrastructure is built and can be used by other providers, different to the PCEHR, and that’s the exciting future. I think other products will emerge, which of course doesn’t mean that we shouldn’t make the PCEHR easier to use. We should. We’ve got to make it easier.”
Tricky medicolegal cases
I asked Dr Hambleton to comment on a few real-life cases. In some instances the doctors involved contacted their indemnity insurers but unfortunately insurers were not always able to provide advice. In his comments Dr Hambleton refers to the ‘AMA guide to using the PCEHR’ which can be downloaded here.
A patient saw another doctor in the same practice who did not upload the latest information to the PCEHR, and the patient subsequently complained to their own GP.
“There is no compulsion to upload anything to the PCEHR. A patient can ask the doctor to upload something but the doctor is not required to do it. The doctor may say: ‘I’m not your nominated healthcare provider but you need to see your own doctor to get another shared health care summary uploaded’. These sort of things need to be talked about in practice protocols and discussed with the patient.”
There was a practice that accessed the PCEHR when the patient was not present, and the patient threatened to sue the practice.
“Patients do provide standing consent for access to their records by registered healthcare providers, so they can assist with their healthcare.”
“I think we have to talk to the AMA or the indemnity providers, but accessing the PCEHR for reasons other than the patient’s healthcare probably is not appropriate access.”
One patient demanded that the GP did not mention essential information available in the PCEHR for a report to an insurance company. The GP was unsure what to do.
“That’s very clear. If you have to write a medicolegal report it would not be appropriate to access the PCEHR, as it’s the patient’s record. If you’re writing a medicolegal report doctors can only access their own records, unless the patient has given permission to access their PCEHR. Practices need to think about protocols that describe who accesses the PCEHR and why, and have systems in place to make sure this happens.”
Misleading, missing or incorrect information causes mistakes or harm. Many doctors are unsure how they can assess if information available in the PCEHR is reliable or not.
“I think this is a really important comment as well. You can’t assume that any information in the PCEHR is absolutely accurate. If you are using that information you often have the patient in front of you so when you are taking a history, check if the information is accurate or not. No information is ever going to be complete and we shouldn’t expect that the PCEHR contains complete information.”
“Patients have the right to say, for example, ‘please don’t upload the fact that I had a termination’. Patients should understand that we don’t have to use the PCEHR and if we do, it should be weighed up like any other object of information we get.”
By looking at the PCEHR billing information providers can find out where patients have been, eg other doctors, even if a patient has asked the other doctor not to upload anything to the PCEHR. Are we supposed to have access to this information?
“Well, supposed to and allowed to are two different things. When patients consent to the PCEHR use, they are basically providing standing consent for access to the information that’s there. They have given consent but they also need to understand what consent means.”
“Patients have a lot of control: You can shut it down to one doctor or you can shut it down to only the doctors you give the access code to, and patients can switch the controls on and off.”
Some doctors are concerned that information they upload may be deemed not 100% accurate, in which case they would be in breach of the PCEHR Participation Contract.
“We are trying to provide the best available data. We will be judged by the standard of what a colleague reasonably would have done in the same circumstances. The intention of a shared health summary is to provide the next practitioner with a guide to manage the patient. If you think about it: there is not much difference between uploading a health summary to the PCEHR and writing a referral to a colleague using that exact information.”
“It is part of good medical practice to continually review the information that’s there, and for example delete previously prescribed antibiotics from the current medication list, and look over the past medical history we’re providing to other doctors to see if it is still relevant and useful to the patient’s medical care. It is certainly true that if you upload reams of information you may confuse the next provider.”
Health Minister Sussan Ley has announced that “the Abbott Government will deliver a rebooted personalised myHealth Record system for patients and doctors that will trial an opt-out, rather than opt-in, option as part of a $485 million budget rescue package (…).”
I like the word ‘rebooted’, as it implies a fresh start and that is certainly what the Australian e-health records system needs. ‘MyHealth record’ sounds better than PCEHR too. But many questions remain, including the most important one: will clinicians use the renamed system once it’s opt-out instead of opt-in?
The legal stuff
Clinicians have concerns that have not yet been addressed.
For example, at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out.
When healthcare organisations or practices cancel the PCEHR participation agreement, seven of the fourteen clauses survive termination, including liability of providers.
Other concerns are that the Minister of Health may make or change PCEHR rules without legislation and the Department of Health can change the participation agreement at any time without the need for input from doctors or patients.
If the Health Minister is serious about engaging clinicians, here are some of the issues that must be resolved:
The purpose of the PCEHR (myHealth Record) must be clear
The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians
If consumers want to opt out at any stage, they should have the option to have their data removed from the system
If providers opt out at any stage, their liability should end as well.
And that’s just the beginning. Here’s to hoping that the $485 million will be spent wisely.
In healthcare we’re often confronted with poor quality software. Bugs and security issues are common, and the design is usually not intuitive. I spoke to Frank (not his real name), an insider in the health IT industry. Frank gives us an interesting look behind the scene and seven strategies for developing or implementing new software.
“Any industry can be a target for poor software,” says Frank, “but healthcare certainly has its fair share. Believe it or not, medical software is unregulated. Medical software that runs on a computer, mobile phone or tablet does not fit the definition of a medical device in section 41BD of the Therapeutic Goods Act 1989, as they were not intended by the manufacturer to be used for therapeutic purposes.”
“How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?
“There is a serious gap between software design and the real-world application. Often software developers do not fully understand what is actually required by the healthcare industry to support the services that they provide.”
“Far too often, developers over-promise and under-deliver. What software can do often does not live up the expectations of the customer. How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?”
Causes of poor quality
Some argue that developers should test their product better before it can be used in patient care. Is this an issue?
Frank: “Quality must be incorporated into the entire software development life cycle, from inception through implementation and this is not always happening.”
“A lot of the actual coding occurs overseas, in countries like India, where the employment costs are much lower. Code may be written cheaply and quickly overseas but it isn’t necessarily quality code.”
“Testing is often an after thought and done quickly due to time constraints
“Testing is often an afterthought and done quickly due to time constraints. The most crucial functionality usually gets tested but bugs can still slip though.”
“On the other hand, sometimes the client is not specific about their requirements. This could be a result of not engaging the organisation to understand what requirements need to be met. How often are clinical and other front line staff asked what they need before software arrives?”
Talking about client requirements: Let’s look at the Australian national E-health records database, the PCEHR. The Government wants to use the data and eventually save money (even though so far they have wasted millions of dollars on the project). Consumers want full control of the data, and doctors need a reliable, safe, secure and easy-to-use tool. Is it possible to develop a national product that ticks all these boxes?
Frank: “Highly unlikely. There are too many competing interests and egos with those that have been involved. In the early days, NEHTA was an interesting organisation to observe. It was obvious that they didn’t understand the complexity of system interoperability or consumer expectations on how information is to be shared and stored.”
“Fear, uncertainty, and doubt also play a part in the slow uptake of the PCEHR
“The reality is that software used in healthcare is effectively a closed shop, and it’s difficult for different systems to be integrated. Once you’ve bought a solution from one vendor, it’s incredibly difficult – but not impossible – to walk away from it.”
“Also in recent years, there has been a seismic shift in patient expectations overseas and we’re starting to see the rise of patient advocates and patient hackers. These are savvy people who aren’t going to sit back and be a passenger in their personal health journey.”
“Fear, uncertainty, and doubt play a part in the slow uptake of the PCEHR. Some providers don’t want patients to be able to access reports on the PCEHR, others are concerned that patients may choose to make some information not sharable or viewable which may compromise care. I think the truth lies somewhere in between.”
7 tips to avoid fiascos
I asked Frank what doctors, healthcare managers and business owners can do to avoid disappointments. Here’s his list of 7 tips:
Be as clear as possible about your expectations and needs. Make sure you discuss the features you’re looking for and categorise them: absolutely essential, must have, good to have, nice to have, can live without. Ask how many features the software developer can provide in your first 3 categories.
Make sure that the software vendor understands your requirements. Get them to provide their understanding in writing so that you can see that they’ve understood.
Does the organisation hold certification for both ISO 9001 (Quality Management Systems) and ISO 27001 (Information Security Management) across all business units?
Find out where the software is being developed and supported from.
What is the quality like? Is it secure?
Don’t pay anything to a software developer before you are sure what you’ve been given is fit for purpose and what you asked for.
What contingencies are in place if the software fails to deliver as promised?
Healthcare around the world is plagued by software problems. To give just a few examples:
Issues with the Obamacare website caused user frustration, but also security breaches. Personal information was disseminated over the internet, affecting millions of people.
Closer to home, the Australian PCEHR has difficulties getting off the ground because of concerns at various levels. Major security problems with the Australian MyGov website – which also gives access to our eHealth records – were exposed by a researcher who was able to hack into the secure part of the website.
Queensland Health has an unfortunate track record of software problems, most recently with Metavision, an intensive care software package that created medication errors.
Why is the healthcare industry prone to these software debacles?
I caught up with Australian health IT experts to get some answers. In this post I’m talking to Sydney professor Enrico Coiera, who has extensive experience in the field of health informatics and bioinformatics. He’s got interesting things to say about eHealth, the PCEHR, and Telstra’s plans to enter the healthcare market.
What’s the cause of e-health fiascos?
Coiera: “Today in Australia there is still, inexplicably, no governance system for e-health safety. No one is looking at your GP desktop system to make sure patients will not be harmed through its use.”
“Yet, look at what has been achieved in the airline industry, and then compare their safety governance processes to those that we have in healthcare IT. A functional and effective governance system needs a rapid reporting arm, and a rapid response arm.”
“If something goes wrong it must be reported, and rapidly communicated back to all other users who might be experiencing the same issue, and then quickly repaired.”
“The other thing is of course that while we are fiddling and doing nothing, clinical software is getting more complex, with more functions and more opportunities for failure, and as a result, patient harm.”
“In the past, software failures weren’t always seen as a patient safety issue. IT glitches were regarded as annoying, perhaps time-wasting.”
“It’s only in the last decade that we’ve realised that unsafe IT makes for unsafe care. And now that we know that e-health is a patient safety issue, people are not putting up with it anymore. They do want to know that their clinical systems are safe.”
Man vs machine
I often wonder if software solutions are tested thoroughly enough before they are introduced in the clinical setting, but according to professor Coiera I’m underestimating human factors as a cause for errors:
“I’m not sure that improving software testing is the only challenge with e-health safety. Having said that, in Australia there are no requirements on testing for clinical systems, so we don’t know whether or not even this basic requirement is being met by software vendors.”
“My biggest criticism of the e-health industry is that their software is often not very innovative.
“Keep in mind that there is no such thing as a safe system: While about 50% of e-health incidents are primarily technical in origin, the other 50% of incidents are caused by a human factors, for example someone selecting the wrong medication or medication dose from a drop down menu.”
“This means that to have a safe system, both our software needs to be built to appropriate standard, but also that clinicians must be trained to be safe users of the technology. Implementations of software in clinical settings also need to be carried out with an eye to risk reduction.”
“My biggest criticism of the e-health industry is that their software is often not very innovative, and not designed with human factors in mind. It is hard to comprehend how unusable some clinical systems are, with too many clicks to achieve even simple tasks, and user interfaces simply adding in new functions and becoming complex over time, rather than focusing on clarity and simplicity in design.”
“This lack of innovation is probably a function of the size of the e-health market, and the ability of vendors to lock in customers by making it hard to move from their system to others. Innovation comes from true competition, as well as customers who reward innovation.”
How do we fix the PCEHR?
Many people are calling for a rethink of the PCEHR, saying that a massive data repository is not the answer.
Coiera: “There has never been a strong case to develop a centralised national record. The main issue with the PCEHR design is that its explicit clinical purpose has never been clear.”
“GPs should have access to hospital patient data, but that can happen by logging on directly to the hospital system.
“There are actually many compelling reasons to move data around the system, using more interoperable records and networks. GPs for example should have access to hospital patient data, but that can happen by logging on directly to the hospital system, not looking at some extract of the data in a central repository.”
“Wasn’t that the whole point of the Internet, for goodness sake? Data needs to be fluid, it should move around.”
Big business vs big government
Frustrated with the government’s PCEHR, some are hoping big business will solve the problems. Telstra has announced plans to get involved in telemedicine and e-health. The question is whether this will be an improvement, as Telstra has had its fair share of software malfunctions – including at least one security breach affecting one million BigPond customers. But Coiera is positive:
“We should welcome big companies, it’s good for us. The government’s job is to protect privacy and security through regulation and law. The government should stick to what it’s good at, and leave software development to industry. Government is used to being in charge and driving change top down, whereas businesses are usually better at listening to the client.”
“I think we will be seeing that government gets out-of-the-way in e-health, while still protecting the rights of citizens via law. With the arrival of industry should come competition and innovation. The companies that listen best to what we want as clinicians and consumers will win.”
Where are we at with the PCEHR? I asked four leaders in the field about their thoughts: Has it been a success or a failure? Can it still be improved and if so, how?
Dr Frank Jones, President of the Royal Australian College of General Practitioners: “The concept was always good, but it failed to engage with front line medical professionals and was hijacked by lawyers. I am also really unhappy with the government’s plan to upload results if not viewed by the requesting doctor after seven days – a disastrous situation!”
“The other thing that is never talked about and that people outside GP-land are unaware of, is that GPs can already access their practice patients’ notes, anywhere, anytime. GPs leading the way again – in many ways this has diminished the value of a PCEHR at a front line GP level.”
“Lets get the basics right first: Initially we need the information such as active relevant medical issues, allergies and OTD medications.”
In its present form a failure
Dr Brian Morton, Chair of the AMA Council of General Practice: “In its present form as a GP I would have to say it’s a failure. There is no recognition nor remuneration for GPs to spend the time to prepare and submit the data which must be done with the patient present. Professional clinical input to the design process has not been given the status needed to make PCEHR workable and relevant to medical practice.”
“Privacy and consumer political correctness have over-ridden safe principles of health care. The very poor uptake of the PCEHR is evidence of this. If we are to reap the benefits then recognition of the cost of data entry needs to be made.”
“Remove and prevent data which is not clinically relevant for care, for example Medicare billing data, as medical assumptions cannot be safely made based on a billing event. Identify clearly in the record that data has been removed or data hidden; the ability to over-ride the control of this is inadequate for safe care. Start the use of PCEHR with small and focused data entry such as active medical history.”
“Make a Medicare item number for the initial entry of data and an item for review yearly by the patient’s usual GP. Enable the functionality of automatic loading of diagnostic imaging & pathology data to the PCEHR when it is received and reviewed by the requesting provider. For example in our software: when it is transferred from inbox to patient record.”
A clear disaster
E-health blogger Dr David More says: “It is a clear disaster as it has failed to be utilised by, and successfully engage with, either clinicians or patients to any significant degree after what is over two years since initial implementation.”
“It should simply be abandoned and a new eHealth Strategy based on serving the needs of clinicians in information sharing and use developed. Patient engagement should be at the level of providing useful e-Health services to such as e-mail, repeats, referrals, results and record access via local practitioners.”
Dr David Glance, Director Centre for Software Practice, University of Western Australia: “I would say that the PCEHR is effectively dead – there is some interesting commentary here. The liberal government has not killed it but they haven’t supported it actively either. Nor have they put forward any other strategy. So given the financial climate we are in now, I don’t expect that to change.”
“I fundamentally believe that Australia has a basic structural issue when it comes to implementing central strategies around eHealth. We are still lagging in electronic record adoption in our hospitals and public health services and to a lesser extent within the specialist community. Until that changes, any shared electronic health record will always have gaps and be less than useful.”
“Clearly NEHTA needs to be disbanded and something else put in its place. It was self-serving, bureaucratic and pretty hopeless when it came down to it.”
“With regard to opt-in/opt-out, I would say that opt-out is always a better option with a far easier access mechanism than was implemented for the PCEHR. But given how awful the implementation was, the point was moot. Talking of the implementation, given what we know about user interface, you would have thought that the interface to the PCEHR could have been a lot better than it was.”
Although doctors are in the top three of most trusted professions, they also have a conservative image.There is the perception that doctors are resistant to change, such as the introduction of eHealth in their practices.
Nothing could be further from the truth.
Doctors are used to change. Medicine and healthcare are areas where new developments happen on an almost daily basis.
However, just because something is new, doesn’t mean it’s better. Many doctors have learned this the hard way. That’s why we need to be convinced before we change our current practices. Not with arguments but with evidence.
It’s best to try a new idea out on a small scale. Prove that a product or service has benefits to patients and doctors – but no major disadvantages – and we will consider it.
Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.
In its current version the Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.
Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.
What are the pros and cons? Here are some of the often-mentioned arguments:
Improved participation and responsibility
Increased consumer’s knowledge of their health care plan
Consumers can read their notes before and after a consultation as reminder
Consumers can help health practitioners to improve the quality of the data, eg by adding comments
Consumers can better assist practitioners in making fully informed decisions
Consumers may interpret the data incorrectly creating unnecessary concerns
Increased risk of security breaches and unauthorised access
Unwanted secondary use of the data by eg insurance companies or governmental organisations
Practitioners may need to change the way they write their notes
An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.
Most of the fears of clinicians were, although understandable, ungrounded:
The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
Consumers did not contact their doctors more often
A minority of doctors thought OpenNotes took more time, others thought it was time-saving
According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.
Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:
Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.
I believe there are 3 trends happening that will push this development:
The culture of sharing data online
The increasing consumer participation in health care
Evolving digital and mobile technologies
The 3 main reasons why it will not happen overnight:
An attitude change towards full access takes time
Security and privacy concerns
Lack of incentives for software developers and practitioners
Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?