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THE impending move to opt out of the My Health Record will potentially have a very significant impact on GPs and their work practices. It is suggested that GPs need to make informed decisions regarding their use of the system and the advice they give to patients.
The following is a summary of the My Health Record, its context within the government’s broader agenda for acquisition of health and other datasets as well as the way the government is attempting to persuade GPs to participate in its use.
What is My Health Record?
According to the government’s website myhealthrecord.gov.au, “My Health Record is a secure online summary of your health information”.
This gives the impression that when a patient signs up for a My Health Record, or is registered for one under the opt-out scheme, they will get a summary of their health information. They won’t.
The opt-out scheme will only register a patient for a My Health Record. If a patient wants their My Health Record to contain a Shared Health Summary (SHS), they must appoint a nominated service representative (often their GP) and work with them to populate, manage and regularly update the information. It won’t happen automatically, and it isn’t just a simple matter of clicking on a button and uploading data. This is what the government’s website says:
“The first time you log into your My Health Record there may be little or no information in it. Information will be added after visiting a healthcare provider such as a GP, pharmacist or hospital. You can begin to add your personal health information and notes straight away.”
Most of the data in My Health Record are not health information; they are data relating to a patient’s medical treatment. The system is not designed to store health data such as weight, height, blood type, alcohol use, smoking and exercise patterns.
My Health Record is a simple document database. It is based primarily on pdf files, which are simply aggregated without being integrated or managed from a clinical perspective. It is owned and controlled by the federal government and attached to clinical, hospital, pharmacy, imaging and pathology systems, which can upload medical data to it and download medical data from it.
Ironically, for a supposedly personal health record, a patient cannot print a copy of their health information.
My Health Record is an additional record system, on top of, and in addition to, GPs’ existing systems. It requires extra effort to manage, yet it offers no benefit to the GP because most if not all the data are already in the GP’s existing clinical system. The pdf format of the data files makes it difficult and time consuming to access, and the lack of context makes their use in research or analytics problematic.
Uploading an SHS is not simply a matter of clicking a button. The patient’s GP takes on an unknown responsibility and/or liability, in the sense that this has not yet been defined in legislation or tested in court. The AMA’s “Guide to Medical Practitioners on the use of the Personally Controlled Electronic Health Record System” makes it clear that uploading an SHS is not trivial exercise.
The government’s website says:
“When creating the SHS, the nominated healthcare provider needs to ensure that all aspects of it have been completed and verify the accuracy of the information it contains. In assessing its content, the nominated healthcare provider should take into account other relevant information on the patient’s My Health Record.”
My Health Record may also include discharge summaries. A recent MJA InSight article was critical in its analysis of these. Under the title of “GPs want clinical handovers, not discharge summaries” the authors said:
“In the real world, GPs are grappling with being thrown links to hospital electronic records through systems such as ‘The Viewer’. Investigations are likely to be uploaded (after a delay) to My Health Record. These are raw data, unfiltered and disorganised, and more of a throw than a handover. Being thrown raw data and being expected to catch them in this way is akin to a hospital doctor being given the login to the GP clinic’s patient management system and being expected to extrapolate a referral.”
This probably applies equally to all the summary documents: the SHS, discharge summaries and event summaries.
The issue of raw data in My Health Record applies also to test results, which, without context, are useless at best and dangerous at worst.
“Among patients with low health literacy and numerical skills, confusion about the meaning of results is common. Many tests are reported in the same form that the doctor sees them, which even savvy patients may find ‘literally meaningless’ … In some situations we run the risk of patients misinterpreting that there is no problem when there is one, or assuming there’s a problem when there isn’t.”
In addition to summary documents and test results, there are data that are derived from government systems.
My Health Record is not designed to replace existing clinical systems. This is appropriate because the federal government is not directly involved in, or responsible for, the delivery of health care services. My Health Record is an additional source of summary health care data, where the data are derived from existing health care systems. In other words, most, if not all, the data in a patient’s My Health Record are already in their GP’s clinical system.
By far the largest number of documents come from the Medicare system, comprising only billing data, with minimal clinical information, and Pharmaceutical Benefits Scheme prescription data (677 177 059 combined) compared with clinical documents (5 477 845), as reported on 29 April 2018.
My Health Record in context
Announcements from the Australian Digital Health Agency website seem to suggest that the government will be extending My Health Record in order to relate the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data to health care activities. Without the detailed data held in GP and hospital systems, it is difficult to see how this could be useful to either clinicians or medical researchers.
It might help GPs to know that My Health Record is not the only initiative that the government is pursuing with regard to health data and what the government is, or could be, using these data for. These include:
- An Australian Bureau of Statistics project, the Multi Agency Data Integration Project (MADIP) which is designed to link data from the Department of Social Services, the Department of Health, the Department of Human Services, the Australian Taxation Office and the Australian Bureau of Statistics. The purpose of the MADIP is to “create an enduring, linked, publicly accessible research dataset, which is on hand to help government agencies and researchers respond to nationally important policy and service delivery questions”.
- The Practice Incentives Program – “activities include continual improvements, quality care, enhanced capacity, and improved access and health outcomes for patients”.
- A new division of the Department of Health, Provider Benefits Integrity Division, that “is responsible for identifying, investigating and treating incorrect claiming, inappropriate practices and fraud. The Department is consulting stakeholders with the intention of changing a number of acts. The proposed changes would amend the Health Insurance Act 1973, the Health Insurance Act 1973, and the Dental Benefits Act 2008 to allow the Department to directly collect information from employing organisations, corporations and hospital authorities such as practice records”.
Persuasion
The government is planning to actively promote the use of My Health Record among GPs through a variety of techniques and technologies. Some information about its intention is available through a Request for Expression of Interest (REI) for what the government calls “test beds”.
The repeated objective of the test beds project is to identify benefits of My Health Record. Not costs, not risks, not to evaluate My Health Record, just to identify benefits.
As it says on slide 16 (at 21 minutes 30 seconds) of a presentation available on YouTube:
“Their purpose is to promote innovation to address Australia’s highest priority health challenges, generating evidence of how the new approaches improve health outcomes.”
The tender documentation says:
“This REI process is intended to enable the Agency to establish test bed projects that will produce evidence of the positive impact of new digitally enabled services and models of care, and demonstrate that they are sustainable and scalable.”
and:
“The first tranche of test beds should include use of the My Health Record system and how it can be utilised to create new, digitally enabled services and models of care, particularly where these can be rapidly implemented or are already underway.”
In an addendum to the Test Bed REI, the Australian Digital Health Agency provided some information about its activities. These are the six evaluation projects mentioned in the YouTube presentation:
- evaluating how GPs in primary care use My Health Record to improve their patients’ health through improved medicines management, sharing information, and reducing unnecessary duplication of diagnostic services, with the National Prescribing Service (NPS) MedicineWise and the University of Melbourne;
- evaluating how GPs and hospitals use My Health Record to improve their patients’ health through improved medicines management, reducing unnecessary duplication of diagnostic services, and reducing hospital admissions and length of stay. This is with PenCS, Western Sydney Primary Health Network, the University of Western Sydney, and NSW Health;
- educating GPs about how to use My Health Record to improve their management of patients’ medicines (specifically deprescribing inappropriate medicines) and reduce unnecessary duplication of diagnostic services. This project is a specific multifaceted education intervention with MedCast and the University of Wollongong;
- quarterly tracking of health care providers to investigate awareness, readiness, attitudes, and experience regarding the My Health Record system through to early 2019. This is with McNair YellowSquares and Rodika Research Services;
- changing clinical behaviour in primary care using My Health Record to improve uploading and viewing of documents, sharing of useful and accurate information, and informed clinical decision making. This project involves the discipline of behavioural economics and is with the Behavioural Insights Team Australia; and
- evaluating the performance of the My Health Record system by conducting data analytics on de-identified, administrative, non-clinical My Health Record data to investigate the impact on medicine management, ordering diagnostic services, adherence to evidence-based care, patterns of health care use, and associated costs.
Conclusion
The Australian Digital Health Agency (the operators and custodians of My Health Record) and the government have failed to understand that health care professionals need better access to current, accurate, well formatted and managed high quality patient data. Only a few patients want access to their medical data. This could be achieved at minimal to zero cost to government through improved interoperability and patient portal access to GP systems – as is available in Sweden. GPs could benefit from tools that assist them to understand the data and to make better decisions.
Current, accurate point of care data are much more important than historical data. The current focus on health and medical records is in danger of turning GPs into data entry clerks and can lead to burnout. An ineffective, pseudo health summary record system doesn’t meet the needs of health professionals or of patients. All it does is increase costs, reduce medical effectiveness, and put patient privacy at risk.
Better sharing of patient data among health professionals has significant potential medical benefits. Giving them to the government doesn’t, especially if the intent is to monitor and question the activities and decisions of health professionals. An unintended consequence could be that health professionals are further distracted from health care by having to justify their activities and decisions.
Quo vadis My Health Record?
My Health Record replaces nothing; it does nothing for GPs apart from increasing their workload; it does nothing for a patient that a GP can’t do at minimal cost as and when required; it is on a path to nowhere; it is a major privacy risk and will potentially lead to further bureaucratic inefficiencies.
It may also provide insights into GP work practices and clinical methodologies.
The government has made plans to persuade GPs to participate in My Health Record using a variety of mechanisms, mostly so far unannounced. It would be wise for GPs to be fully aware of the nature of My Health Record, the full range of uses the government could make of data in the system over and above any benefits that might accrue to patients, and the techniques the government is contemplating bringing to bear on GPs and potentially other health providers.
The future of My Health Record is in the hands of GPs.
Dr Bernard Robertson-Dunn is not a GP or health care professional. He trained as an electronic and automation engineer, has a PhD in modelling the electrical activity in the human small intestine and has had over 40 years modelling, architecting and designing large scale information systems, mostly in government environments. He has been following the progress of, and has contributed to, the debate on the My Health Record for over 10 years. He has no association or affiliation with any vendor or government organisation. He is chair of the Health Committee of the Australian Privacy Foundation.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.
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I totally agree! It’s nothing but invading patients private records& I am for one, had opted out of the medical records when it first came in& have the email to prove it!
Unfortunately it’s still been accessed heavily by all the medical system& it makes it impossible to get a second opinion, when you know that you’re not well! The specialist looks at you& tells you: nothing wrong with you! But he doesn’t mind taking your money at the end! This made it easier for the elephants to protect each other, but not look after their patients!
The billing information in the system is a good way of checking when you had your last skin cancer check up or colonoscopy to screen for bowel cancer. At 60 I’m due for skin check annually and the colonoscopy every 5 years. Although you do get reminders from the GP and skin clinic and specialist, sometimes the reminder system fails, for example when they put in a new computer system or simply lose your records.
From my own experience as a patient I believe that once on the e-record, obtaining a second, independent medical opinion for a condition will become just about impossible. An independent second opinion saved me from a radical ‘suspected cancer’ surgery after a GP, a specialist radiologist and another specialist/surgeon suggested I needed to have this surgery in order to save my life. 17 years down the track I am still alive and never had cancer.
These are my questions:
1. How many patients have died due to medical errors, doctors not knowing the patients’ medical history, serious adverse side effects of medications that won’t be admitted by doctors and pharmaceutical companies?
2. If the outcome is that due to e-health records x number of patients’ lives could be saved, wouldn’t that be an admission that x numbers of lives were lost in the past and we were never told why?
3. Is there a risk that the medical records and not the patient is being treated?
4. If I broke a leg and end up in ER, is it important for doctors to learn from e-health records that three years ago I was on antibiotics for a sinus infection and that due to checking the records it has taken longer to relieve pain and plaster the leg?
If an unconscious ER patient doesn’t carry personal identification of some kind any e-health records are useless and then it is up to the skills of doctors and nurses to assess the condition. I still like to believe that our doctors and nurses are well trained and capable to assess the condition of an unconscious patient.
‘Doctor and medication shopping’: Yes, there is a risk that patients who opt out may consult several doctors in order to get may be dependency causing or addictive medications. Yet, pharmacies already keep records which minimizes the risk.
What I really would like to see is that it is being made MANDATORY for pharmaceutical companies and pharmacists to include detailed patient information in each and every packet of prescription medication without the patient having to ask. I am horrified that GPs can write “ x number of tablets per day” on the most potent prescription medications, even those that can cause drowsiness and have other ‘mild’ side effects that, when accumulated, are not so ‘mild’.
I wonder how my grand-parents and parents managed to survive into their mid-eighties without e-health records.
I think you’e never been a doctor in a public hospital on-call or on weekend trying to get some information about a patient presenting to ED unconscious with no peers to provide collateral history. Even the scarce information available through the emergency access on My Health Record is extremely useful and allows us to provide better care. So let’s make an effort to make some use out of those “wasted” millions rather than criticise and resist.
Re “True, the bulk of useful information will come from GPs, but the minute or so it takes to upload a SHS would be of great benefit to the patient overall, wouldn’t it?”
My response – uploading an SHS will not necessarily be of great benefit to the patient. If it is done ad-hoc as I believe it will be – so an ad-hoc snapshot of health information – how reliable will this be? Don’t we want real time data?
Re the impact on each consultation:
Assumptions – a standard consultation is booked at 15 minutes – maybe 12 minutes with the patient, maybe 3 minutes creating the medical record. An additional 1 – 2 minutes on MyHealthRecord suggests either the consultation time will be made shorter or the patient will attend for longer and potentially pay a higher fee (as will Medicare if the time goes to over 20 minutes). Has any financial modelling been made available to healthcare professionals and the community re these issues? Even an extra 90 seconds on “admin” within the average GP consult means that something like 12.5 % of the patient consulting time is lost.
Disclosure – I am currently working as a GP.
Of course I understand that the information in a record isn’t only visible to the patient. Many people have access and once it it downloaded, the myhr prohibitions and authorisations don’t apply. Not only that, the government has free and unconstrained access to the data to “protect the public revenue”. It’s in the legislation – look it up.
Something I mentioned in the article is the Behavioural Economics techniques the Department of Health is using. It’s division is BERT
http://www.health.gov.au/internet/main/publishing.nsf/Content/behavioural-economics-research
There’s a report here you might find interesting:
The GP letter experiment: so what the bl**dy hell is BERT?
https://www.australiandoctor.com.au/news/gp-letter-experiment-so-what-bldy-hell-bert
I wonder what “consumer awareness activities” you are expecting in the opt-out period. Tim Kelsey, head of ADHA, stated in his recent Press Club address that there would be no letters sent out to patients, nor would there be any TV or radio campaign. Rather they would rely on GPs and pharmacists to educate patients. Heaven help time-pressed GPs and the check-out chicks at Chemist Warehouse who are supposed to explain the ins and outs of this complex government policy.
Mukesh – people can cancel their record at any time, before or after the opt-out period. The opt-out period hasn’t started yet, meaning that consumer awareness activities have yet to really ramp-up. Also, Mr Robertson-Dunn doesn’t seem to understand that the information in a record isn’t only visible to the patient, helping them further understand their health, but is also visible to any other of their health care providers. True, the bulk of useful information will come from GPs, but the minute or so it takes to upload a SHS would be of great benefit to the patient overall, wouldn’t it?
Bravo Bernard: an excellent piece. I hope it is widely disseminated read and heed paid. The push has become a hefty shove. Citizens have a 3 month window to opt-out of being opted-in to what will become an out-out system. What they really need is access to someone that can hold their hands and guide them – not on a web-site or podcast or YouTube video – but a real person explaining what the record is. How it works today. Aspirations for the future. How to log on and enable the security settings that are actually very good. For the x00,000 AHPRA registants and other eligible providers: have fun enrolling understanding and using – and being very visible!
'My [electronic] Health Record' – cui bono (for whose benefit)? – DRO: http://dro.deakin.edu.au/view/DU:30090274#.WzqbTY5VCeE.twitter
I think the public needs to be made aware of this system, especially risks to privacy and negligible positives. I and my professional friends (all GPs) intend to opt out, as do many of my tertiary educated acquaintances. The risk is that people will be unaware of the need to opt out and the short window of opportunity to do so. Mental health patients and those with substance issues face the very real possibility of discrimination once their details are uploaded.
Another completely useless but costly (squillions) thought bubble of the previous federal Labor government.
Hi Bernard,
I’ll respond in order of importance.
I’m assuming your major question is referring to so-called “Secondary Use” (last time I’ll use scare quotes – I prefer to abide by the “record once, use many times” principle for all data, which means there never is secondary use). The question must be, because My Health Record data is not given to the government or any other agencies unless it is through the Secondary Use mechanism. Because of your following comment, I’m not sure that’s actually what you meant, nevertheless, if it is about Secondary Use, then the answer should be obvious. The Secondary Use Framework answers it pretty well in its Appendices. With good methodology and deep understanding of the context of the data, useful insights can be derived. All going well, these should lead to improvements in outcomes for patients, and a better healthcare system overall. The caveat is that all may not go well and deep understanding is not present. I’d like stronger reassurance that those involved are accountable and will pay the price should anything go wrong.
There are indeed a number of ways of improving the healthcare system (I assume that’s what you mean by “achieving the government’s aims”) and some are better than My Health Record. But that’s the limit on what I can comment, because I can’t tell what you mean. It seems you’re conflating Secondary Use with opt out. Could you clarify?
It’s interesting that the website no longer says “… should take into account other relevant information on the patient’s My Health Record”. I can understand why it’s gone. The current usability of the My Health Record in the clinical software does not make that possible. And the AMA’s advice is probably fair. It certainly is not trivial. But then, most of what a doctor does is not trivial. Where it becomes a problem is workflow. All of what needs to be happen could be done either very easily or with great difficulty. It all depends on how the components of the practice’s system/s are working together. It is possible for an SHS upload to be a fairly simple task. If the GP is confident about the data and the practice is supporting her in patient awareness and practice data is used, re-used and incorporated in improvement, then it should be quick and fit in easily with the consult. These conditions are often not met. Improvements to the clinical software (which should have been in place from day one) have finally made it technically easy, but there are other elements of friction. But also, this is true for many other aspects of clinical practice. Judging the benefits of uploading an SHS probably comes down to whether or not you think the concept of a shared electronic health record is a good thing. I think it is. I think we have a starting point now and it should get better.
Saying “many documents are based on pdf files” is still misleading. Hardly any are. By making this point, you’re ignoring the benefits of atomic CDA. Some of those benefits are already realised (e.g. the Medicines View). You also make it difficult to focus on where PDF is manageable, and where it’s not.
There are a few other things I would change. For example:
– You say that government has “failed to understand that health care professionals need better access to current, accurate, well formatted and managed high quality patient data”. You’re talking here about a unicorn. Data like that mostly doesn’t exist in healthcare. Healthcare data is extremely complex and it will take all of us a while to get it into a workable, shareable state. (Incidentally, My Health Record will help with getting it into shape, because it re-uses data).
– “Only a few patients want access to their medical data.” I encourage you to read about OpenNotes and follow @ePatientDave, because that statement just isn’t true. Health literacy is incredibly important to outcomes, and the more health literate a person is, the more important they find the data. But even non-health literate patients can find themselves frustrated by lack of access. And any effort to improve the situation usually leads to increased health literacy.
– You should not compare the insurance-driven system of the USA with Australia. EHRs are absolutely causing a problem for North American doctors, but the experience is not shared to the same degree by their Australian counterparts (though I do feel for those hospital clinicians wrestling with USA software).
I’m not saying all is rosy. Usability needs to be much better and there needs to be a much richer understanding of patient and clinician experience. But I work in the field, and I don’t think your criticism reflects the broader context and how My Health Record fits into it.
Agree, Agree, Agree. IT promises the sky but burden the workers.
An excellent review, and confirms my previously held thoughts on the programme. It is high time our society as a whole “outed” the purveyors of such schemes for the great wasters of money they are. The millions spent on this white elephant idea could be better used to improve real health outcomes by providing more actual health services. We are spending too much time on “Form” rather than “Content” (e.g. the Plan process of RACGP gets more points than actually updating/learning new clinical information.) “Less MBA’s & more MBBS’s & BSc’s!”
It has always been more political justification for the billions spent and people’s jobs than a system that works for all. Unfortunately, with the recent stick for GPs and carrot for pathology companies approach, it is easy to predict what is going to happen with GP ‘persuasion’ by the government. Other words will be more appropriate. It is a fact that GPs and hospital doctors are the one bearing the brunt of this system and the denial of this has been its biggest oversight. What has been forgotten along the way of ‘MyHealthRecord’ glory is that GPs and hospital doctors have a responsibility to care for patients well. Incomplete records they are forced to look at or contribute to, and untested medico-legal risk do not contribute to this aim and do not take up no time, as some alleges. There lies the problem of ‘MyHealthRecord’, if only some would open their eyes, the answer is right there. Or do they want to?
As a patient with multiple chronic conditions I would have preferred that the billions wasted over 30 years on this project had been spent on primary and secondary prevention. Has anyone decided if the time taken to do GP uploads is added onto the billed time for a GP consultation because mine doesn’t bulk bill (try and find one that does!) and if the consultation time increases I will end up paying for for no better outcome. I will opt out as soon as possible, if enough of us do so it will become irrelevant and hopefully cancelled.
No doubt it will just be a matter of time until we see legal clerks spending hours/days trolling through the info to find some trivial details than have been over looked and use this as a basis of hugely speculative ‘negligence’ claims. And the defence funds will respond by paying out repeated moderate amounts because it is just too expensive to fight in courts, and the doctors premiums will start to sky rocket, and the poor patients will be no better off, but the partners of the lay firms will be able to afford another luxury yacht. Not sure this was how ‘wealth transfer’ was meant to work. The entire system in it’s current form is a joke and a huge medico-legal risk.
Brendon,
Re SHS. The myhealthrecord.gov.au website used to say this:
“When creating the SHS, the nominated healthcare provider needs to ensure that all aspects of it have been completed and verify the accuracy of the information it contains. In assessing its content, the nominated healthcare provider should take into account other relevant information on the patient’s My Health Record.”
This has now disappeared, however there is still a reference to the AMA’s “Guide to Medical Practitioners on the use of the Personally Controlled Electronic Health Record System” which, as I say in the article makes it clear that uploading a SHS is not trivial exercise.
If “based primarily on pdf files” were changed to “many documents are based on pdf files” would there be anything else of substance you’d like to see modified?
There is one major question you might be willing to give an answer to “what health benefits are there for a patient’s data to be given to the government?”
There are a number of ways of achieving the government’s aims, some better than my health record. Giving health data to the government and making the system opt-out diminishes much of the usefulness and reliability of the system.
Your comments would be useful and appreciated.
The statement that it is “based primarily on pdf files” is not correct. Most of the documents are in CDA format and some of them are computable. Where it’s computable, it has already been used to enhance the content. For example, the Medicines View extracts the medication data from different documents and presents it into a single view. Only some document types are PDF (Pathology Result is the main example).
For many GPs, uploading an SHS has become a simple task. To get to that point they find a way to embed it into their consultation workflow, particularly with their interaction with the patient. Granted, data quality is a barrier. This needs work (but GPs are not solely responsible for that work … it’s on the whole practice, and the usability of the clinical software could be improved a lot).
While it’s true it hasn’t been tested in court, there are no apparent medico-legal risks. The tasks and responsibilities involved are no different from what GPs are currently doing.
I have watched diligent GP Registrars sifting through reams of unhelpful allied health uploads, searching for important material without success. Each of them gave up.
What we will have eventually will be a multi billion repository of mainly useless documents.
Let’s call it a haystack. The needles will be very hard to find.
Excellent comments and fully agree. Never heard of this guy but they should give him the job.
This Govt Health record will make white elephants obsolete.