My Health Record: The Case For Opting In

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The My Health Record opt-out period begins this week, and you have until October 15 to pull your records out of the scheme. But should you? Here are some compelling reasons to keep your records where they are.

The My Health Record (MHR) system promises to make Australia a leader in providing citizens with access to their own health records.

The scheme gives health care professionals access to information on your medications and allergies, immunisation records, summaries of hospital and GP care, investigation reports, and advance care plans.

This information could save lives in emergencies by providing health workers with information about drug allergies, medications, and medical history. Better continuity in the management of this information would help reduce the 27% of clinical incidents in Australian hospitals currently caused by medication (mis)management.

The system had a rocky start

Launched in 2012 as the Personally Controlled Electronic Health Record (PCEHR), the system was plagued by technical failures and cost overruns. Take-up was low.

After five years, only 20% of consumers had opted in. Even more seriously, there was limited interest from health professionals – particularly GPs and pharmacists who deal with patients most often.

Faced with the low patient take-up and limited training or information, health professionals saw little reason to waste time on an unwieldy system.

This mirrored international experience. Many countries suffered expensive disasters in building e-health systems from the top down. E-health appeared to serve the interests of administrators, not clinicians and patients.

Not surprisingly, patients showed little interest. British critics of a similar expensive failure warned:

We need fewer grand plans and more learning communities.

The Australian experience has run the full gamut from failed top-down “grand plan” to a version that is more responsive to consumers and health professionals.

Linking up the fragmented health system

Large trials in the Nepean-Blue Mountains and North Queensland Primary Health Networks tested a more user-friendly system. In both trials, the opt-out rate was low: less than 2%. The engagement of clinicians also increased.

In the Blue Mountains fewer than 15% of GPs had registered with the PCEHR. By the end of the trial, with extensive education and training, this figure has risen to 70%.

MHR offers new possibilities for linking up the fragmented health system, making it easier to navigate. Just as importantly, it can help you to become more informed and engaged with your own health care. And better health literacy is a necessary step in shifting the balance of the system towards patients.

The Consumers’ Health Forum – a supporter of MHR – has stated that patients are:

…more likely to give permission to share their data if they understand how their data will be used and any benefits that will come from its use.

However, active participation in MHR will remain a challenge for many people, especially those who struggle with digital literacy.

Addressing security concerns

Any system that contains health information must be built on trust. Most of the criticisms of MHR rest on fears of inappropriate use or hacking of data.

However, critics have not pointed to any breach of the PCHR in its five years of operation. Rather, examples are often drawn from commercial operations which have succumbed to the temptation to commercialise data – an offence that could lead to prison under MHR.

Uncertainty is inherent in many facets of modern life, such as the use of credit card information for online purchases. Most surveys of popular attitudes towards the use of digital health information has shown a consistent, but nuanced concern.

Concerns identified in the two major trials were mainly focused on individuals’ lack of computer skills. But almost all consumers thought the benefits greatly outweighed any potential privacy risks.

The system will only succeed if concerns about protection of confidentiality are respected. A weak link is the digital skills and awareness of health practitioners, particularly GPs.

A large amount of health data is already out there in Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data, the Australian Immunisation Register, and the Australian Organ Donor Register. These data are increasingly linked together, with great potential benefits. Data from Medicare, hospital records and other sources can be linked to improve our knowledge of causes of diseases and risk factors, and the best forms of intervention.

MHR is a step toward empowering patients

Our health system suffers from a deficit of transparency. Patients are locked out of knowledge of how the system works – from the confusion around private health insurance plans to undisclosed out-of-pocket costs for medical procedures.

Rather than protesting about a horse that has long since bolted, we need more scrutiny and improvement of current systems.

MHR is a small step towards empowering patients with greater knowledge about their health. Pressures to present records in terms that are comprehensible to consumers may even take us towards interactive “learning communities” – the basis of a more people-centred health system. Better-informed patients can enable more effective communication and mutual learning from health professionals.

The ConversationIf you choose not to opt out of MHR, a record will be created for you automatically. You can log into the system here to set controls on who has access to your data and set restrictions on the types of data that will be included. You can change your mind at any time and close access to your data.


Jim Gillespie, Deputy Director, Menzies Centre for Health Policy & Associate Professor in Health Policy, University of Sydney

This article was originally published on The Conversation.


Comments

    Let me see, wasn't there already a data breach were lawyers had access to records?

    So what happens when health insurers won't insure you unless you give them access, or they obtain access via other means and not insure you because of XYZ condition or you are candidate to develop XYZ condition. You will never know why you got rejected or pay much higher premiums.

    Whilst it is a good thing unfortunately it is also a gold mine waiting to be exploited. Insurance Company's, Employers, Doctors being influenced by prior diagnosis when you need a second unbiased opinion.

      Legislation will come out that you can't be rejected.

      will just cost you 2-3x as much.

      not exactly. The data selling to lawyers was done by HealthEngine, which is nothing to do with this. I would suggest that the actions of HealthEngine might have helped get the rules around the government health record system tightened.

    While the aim of the MHR is doubtlessly admirable, the track record of similar schemes overseas seems less than stellar.

    However, critics have not pointed to any breach of the PCHR in its five years of operation. Every system is seen as secure up to the point where it's hacked.

    Having now read both the 'opt-in' and 'opt-out' points of view on LH, I'd have to go with the 'opt-out' camp. I'd love it to work, but feel that the down sides outweigh the up sides, especially the fact that after the cut-off date, I have no further ability to opt out.

    I understand my medicare payment history will be available amongst the useful data. Does this mean a hospital will understand if I have Private Healthcare? Certainly at the moment its up to me whether I discide to use my insurance or not... understandably the government would like me to use it everytime, so have they just solved this issue that has plagued them?
    Secondly will my private health insurer have access to the system? Again I'd be pretty unhappy if they did
    Thirdly, there is no suggestion we are paid for the on-sale of the medical data which they clearly state is their Master plan withn the parliamentary discussion papers. Is this all big business spin and the politicians see a yellow brick road? My experience today with our health system works

    None of those are compelling reasons, @jim-gillespie.

    1. The "fragmented health system" is not a reason. It'd be nice from an administrative point of view, but you fail to mention any real reason why that's a reason to sign up to the MHR from a patient point of view.
    2. Addressing security concerns. I'm troubled by your "never been hacked! Must be perfect!" attitude here, especially when data breaches, including medical, are becoming an almost daily occurrence. Surely you know that most data breaches are not even disclosed in a timely manner?
    3. The MHR does nothing to improve transparency, and you don't even bother actually articulating how the MHR will achieve this.

    In short, I have to guess that you drew the short straw in the staff meeting and had to write an article in support of the MHR. I also note that this is your lone article here - are you just a shill for the health industry/government/MHR?

    Look at the data retention scheme. It started out with only select parties being able to access it and over time the list grew and grew. Heck the rspca can get access to your meta data.
    I don't see this system being any different. Over time it will be opened up to more and more interests.

    The fact that the government thinks it can legislate away hacking and misuse should be enough of a put off. Centralized data of this magnitude is ripe for attack.

    No matter the security, systems get hacked and this will be no different. In most cases, admins of compromised systems don't even know they've been hacked as their system leaks data.

    Even the opt-out process should be a clear indication that they are simply forcing people onto the system; YOU have to provide your identification to opt out of a system you never agreed to using in the first place. This kind of counter-intuitive approach should be a huge red flag.

    The only solution I would endorse would be a fully decentralized system using a public blockchain, where users are not only in control of who can use their data but they are the only ones who can unlock it.

    So far, any technology the government has deployed has been a disaster; you only have to look at the ABS debacle and that didn't even get hacked, rather it was pure incompetence that brought that system down.

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