THE My Health Record (MyHR) debate is still raging as the operationalisation of change from “opt in” to “opt out” continues. Many threads intertwine in the vexed program. Then-federal Minister for Health Greg Hunt – at the time of writing, he had tendered his resignation from Cabinet in the middle of the government’s leadership crisis – positively moved to rekindle confidence in the MyHR system and moved the rhetoric from triumphant to acknowledging that we don’t have the “all singing, all dancing bears” in action yet.

On 15 August 2018, the Senate referred the MyHR system to the Community Affairs References Committee for inquiry and report. There have been multiple changes to MyHR, so the legislation governing it must reflect this. There is some good in the MyHR system, but it has to evolve and grow. Political obfuscation will be akin to shooting in both feet the goose that lays the golden egg.

We need clinicians, hospitals and citizens to participate in the system. There must be confidence and a wish to participate. We need an admission of MyHR’s shortcomings from the system’s owners and builders, and there must be agreement to work with the clinical community and citizens of Australia to make good on the unquestionable benefits of keeping clinical information about a citizen in their own hands, to support their own care. The goal must be to improve the quality of health care and life, not to stifle progress.

I am guilty of being an evangelist for the use of technology in health, but it must be with the buy-in of the community, including clinicians, and with ongoing vigilance.

In 1992, soon after I started in general practice, I admitted a wonderful man to a local hospital. Days later, I called his home to check on him: to my horror, I interrupted his wake. This chain of events spurred me into action to try and change our patients’ journey through the health system. Over time, and with decades of advocacy, there has been improvement to the “patient journey”, such that we now speak with our colleagues of patient-centred care, collaborative care, best practice, and we use the latest advances and evidence available.

Possibly, the game changer for GPs is the 98% use of technology for clinical purposes. The complexity of navigating the red tape of prescribing scores of times a day, every day, was the catalyst.

There are vast volumes of clinical information and data that must be accessed, digested then curated and managed for our increasingly chronic and complex patient load: investigation results from numerous places, reports from specialists and hospitals and other agencies. Sadly, other than in pathology and radiology, use of technology has been slow.

In the past, information was in paper form, neatly filed into A4 manila folders or behind “patient cards”. They remained private, secure and safe in locked cabinets and easily searched through for information. Communication by posted letter was revolutionised by the advent of the fax machine in 1988. If we couldn’t find a result, tests were often repeated, with scant concern about cost, patient inconvenience, or hazard. We have not progressed far from this in health.

A vision for the future of health care was neatly presented in the 2009 Bennett Report. Key recommendations supported the implementation of electronic health records, but with core recommendations including:

  • development and implementation of an appropriate national social marketing strategy;
  • payment of public and private benefits for all health and aged care services depending on the ability to accept and provide data; and
  • health service providers , including GPs, medical and non-medical specialists, pharmacists and other health and aged care providers, must be able to transmit key data.

The MyHR opt-out process and its implementation has been far from ideal. It included 3 months to opt out from forced acceptance of a MyHR, with little explanation of what the record is now and what the future aspirations for the system are. The Australian Labor Party were themselves victims to the same problematic roll-out processes in 2012–13.

There appears to be a lack of respect for the public and the providers who are being asked to make enormous changes, incur significant costs and take great risk, including navigating three pieces of governing legislation (here, here and here). Significant changes have been made to the legislation and passed by Parliament with little buy-in from the community. Changes introduced on 22 August 2018, which provide additional privacy safeguards for patients, attest to the community outcry, and this response should bring more confidence about MyHR.

Today, around 13 000 provider groups have signed on to the MyHR — of around 900 000 health professionals who could have signed. Having most of these groups on MyHR is necessary to have a useful system. Most hospitals have access to MyHR but probably never look up the systems because a patient may not have a record or it is empty. Moreover, the necessary clinician enrolment process is still “Pythonesque”.

We need to use technology in health; not doing so is unimaginable. However, a rescue of MyHR will require widening the understanding of why and how it will help us, maximising the benefits of the system and regaining the confidence and trust of the public. We don’t want to flush upwards of $2 billion down the sewer. The consequences would be dire, whoever is in government.

The current scope of the MyHR is narrow and the immediate benefits are few, but there are some gems.

The aspirational goals include reducing the complexity, disjointed patient journey and repeated regurgitation of facts over the years, as well as long term gains from the availability of data to the Australian Institute of Health and Welfare, with their built-in ethics and governance.

Emerging from the 2012 health record legislation, problems, including access to MyHR content, were outed and addressed. The fact that concerns were heard and the legislation amended gives surety and comfort. We need to continue to seek and take advice via meaningful, respectful engagement over time and as user experience informs us. This is a clinical tool in the citizens’ hands, and the better the information we have, the more useful it is.

For a regular patient with multiple complex and chronic conditions who manages their MyHR and has regular data uploaded as their condition and medications change (which they do with monotonous regularity), the MyHR format keeps them and their multiple main providers abreast of their progress – providing the right information, in the right place and at the right time – as up to date as possible.

While much of the public attention has focused on the move to an opt-out system, in reality, the moment of decision about opting in or opting out is not when the main action occurs. Some have always argued that “opt out” is the way to get a critical mass of participants; others were more concerned that usability be achieved. I argue that it starts to matter when documents are loaded to the record and when the MyHR is read. That’s when you are really in. Access to the record can be controlled and locked down by the patient, and if you have a MyHR, you can withdraw it. Similarly, if you opt out, you can opt back in at any time. My advice is – when you are logged in, ensure that you set your privacy controls and understand just what is in your record.

Privacy is the bedrock of clinical practice, and the intimate details of a person’s health journey need never be on the MyHR. It is a set of documents. Not all facts need to be uploaded and patients should be asked for consent before any details are uploaded. Documents can be deleted by patients if they are unhappy, but they cannot be edited.

Security is subject to human and criminal intent and, like with all IT systems, it needs to be carefully planned and maintained. That part of the MyHR build is robust. Users on the system need to be supported to understand it, get on it and participate.

Usability, utility and usefulness are important and can be fixed meaningfully. But we still don’t have interoperability – when one system can interact and share data with another –  and this is a potential area for improvement in the future.

We should be wary of smothering the emerging system; if we scare the horses, we may not see health care reach the potential it should. If we are to rescue the MyHR and allow it to achieve its goals, a strong information program to the public, and indeed providers, is vital.

Dr Mukesh Haikerwal, AC, is a GP; 19th President of the Australian Medical Association; former Chair of the World Medical Association; formerly National Clinical Lead: Head of Clinical Leadership, Engagement and Clinical Safety for National E-Health Transition Authority (precursor of Australian Digital Health Agency); and Past Chair of the Australian Institute of Health and Welfare.

 

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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My Health Record: staying in or opting out?





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11 thoughts on “My Health Record: debate rages but there are gems

  1. Goldcoaster says:

    Unfortunately, Mukesh Haikerwal is an apologist for the MyHealthRecord. Unsurprising, given that he was involved in establishing it. What is needed is a total revamp of the system with the needs of the clinician in firm view. It is the clinician who will be the primary user of this ‘tool’ and it is the clinicians who are objecting most to the limited clinical utility of the system. Dr Haikerwal, a thorough revamp is needed, not the ‘band-aids’ you espouse above.

  2. Dr Watterson says:

    The system works. I use it in my GP practice and in the hospital ED where I work. .. we need to be upbeat and reassure patients that the government security is as good as it can be…

    All the info is already in government databases .. medicare, centrelink, ATO … the my health record allows a format where clinicians can see what is needed when they are treating patients.

  3. Dr Chris Kear says:

    A system which takes thousands of words to explain and justify, and which mirrors a failed system in the UK, is not what’s needed here in Australia.
    Why can’t we have a simple smart card system? The GP holds all the patient records, and uploads them to the patient held smart card. The card can be accessed by any authorised provider with a matching encryption key. When the patient sees a provider, provider data is uploaded to the card, and copied back to the GP system at next visit. This way the patient knows exactly who has had access to their data, and if the card is lost, the GP can simply issue another.

    Quite why we have to have the Government holding the data on their own servers defeats me. We’ve had GP held records since the dawn of time, and if there is a good enough reason for someone to access those, there are legal systems in place. We don’t need centralisation of records by the Government. They can’t be trusted to use the data wisely, or to prevent leaks. They can’t even prevent leaks from their own Cabinet.

    The Government want to spy on us, and the insurance companies want our health records. I’d rather trust my own GP with my records, thanks.

  4. James Acton says:

    I too am an evangelist for technology in health. Collating health records in one place however is too fraught with problems.

    Any guarantees on privacy and accessibility given now can always be changed later. No matter what anyone says in a year, five, or ten there will be open sharing of your health record between various agencies and departments. Your mental and sexual health history will be easily accessible to any who ask, from law enforcement to researchers to health funds. When the metadata retention laws were introduced similar promises made about privacy. Metadata now is no longer a tool to “combat terrorism” but a large record of a person’s online use to be accessed by virtually any who ask.

    Even if we consider current penalties against incorrect use of our health record, there is already proof nothing happens to those who do so. From a minister handing over Centerlink records to police handing over addresses of DV victims to perpetrators, apart from a stern talking to nothing happens… except of course to the victims. For them the damage is done.

    Already people are reluctant to talk with GPs around a range of issues, especially mental health. If they know their records can be accessed at any time without their knowledge by a range of agencies and organisations how comfortable will they be in speaking with a doctor?

    There is absolutely no guarantee you, or anyone else can give that a centralised repository of personal medical information will not be accessed either inappropriately or the rules to access the information won’t change.
    For people like yourself in positions of power, these are not a concern. You have the social capital, money, and contacts to protect yourself if need be. The vast majority of Australians do not. They rely on people like you to look after their interests. So far this is not happening.

  5. Anonymous says:

    My HR has lost its usefulness as a confidential and complete clinical record between regular doctor and, with patient permission, a specialist or ED. It is now essentially an open record for any registered health care provider, which can be selectively edited by the patient to not disclose sensitive but potentially critical medical information. Instead we will have a dog’s breakfast of curated information, accessible to any nosy registered health professional who may be providing their services to insurance companies, employers or government departments.

  6. Anonymous says:

    “I urge doctors to use an incomplete and inaccurate record when making their clinical decisions” Dr H, I invite you to refute this summation of your piece, which I regard as the hole below the waterline that must sink this system.

  7. Bernard Robertson-Dunn says:

    The devil is always in the detail.

    Dr Haikerwal says

    “For a regular patient with multiple complex and chronic conditions who manages their MyHR and has regular data uploaded as their condition and medications change (which they do with monotonous regularity), the MyHR format keeps them and their multiple main providers abreast of their progress – providing the right information, in the right place and at the right time – as up to date as possible.”

    But they don’t. Of the current 5.9million registrations only about 20% have a Shared Health Summary. After the opt-out period, that will probably reduce to less than 5%

    And Dr Watterson’s comment says:

    “All the info is already in government databases .. medicare, centrelink, ATO … the my health record allows a format where clinicians can see what is needed when they are treating patients.”

    No it isn’t. The government doesn’t have a Shared Health Summary or Discharge Summaries or Event Summaries, and the medicare/pbs data lacks detail.

    In fact there is a good chance that the real purpose is to allow the government to gather such detail to help monitor GP decision making behaviour. And then apply Behavioural Economics techniques. And if you’ve not been following this closely, the Department of Health already has a unit doing exactly that.

  8. Anonymous says:

    I don’t really need to add anything here. I just want to support the idea of Dr Chris Kear, and agree with Bernard Robertson-Dunn. We don’t need the Government to have anything to do with a patient system. I trust my doctor. That is why I chose him. Maybe we could change our Medicare card to include the smart-card option of keeping our health password protected in our and our GP’s hands. That way I can make the choice of sharing my health details when it becomes necessary to do so.

  9. Anonymous says:

    Won’t use it or contribute to it, personally or professionally.
    Don’t need another silo of digital data that can’t talk to my other silos. And an insecure one at that: ‘secure as it can be’ may not be secure enough to use it.

  10. Dr Noneed Dismess. says:

    The pamphlet from the Australian Government sent to the public entitled “Your health in their hands” states that “my health record brings together health information from you,your health care providers and medicare”. It says “you or someone authorized to represent you ,can share additional information in your record that may be important for your health care………..including current medications ,allergy information and previous adverse reactions”.
    Will it be incumbent upon us to check said record each time we see the patient? Can you imagine the waffle we will need to sift through? Will the quackopaths post reports of ghost cells seen on blood smears and list the herbs and spices they have sold the patient? What also is the rule for posting specialist reports when they are headed “private and confidential and for your records only”.
    The previous health Minister said we could charge the appropriate fee for time taken to manage the electronic health record.But really , this means no appropriate recompense for doing the “clerking”.A short , standard and long consult will still be the same rebate . If we do the “clerking” in our own time (as we do now for letters \checking results etc) there will be no payment.
    Let’s vote with our fingers and boycott this nonsense.

  11. Anonymous says:

    I asked my patients about the record,some said they had not heard of it (amazing) and most knew very little about it.
    Most were quite annoyed to find out that they would be in a system without their knowledge.
    One patient (who had worked in IT security in the UK) said “there is no such thing as a secure system- my job was to break into them”.
    The opt out actions seem unethical particularly as a lot of the data is to be used for research purposes (possibly including patient histories etc) is to be done without consent.

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