Dr Cynthia Forlini, Research Fellow (editor)
By 15 November 2018, Australians with Medicare coverage will have to decide whether they want to opt out of My Health Record (MHR), an online centralized summary of personal health information. If they have not opted out before then, an electronic health record will be automatically created. Those, like me, who are enrolling in Medicare as adults or even on behalf of children, will have the chance to opt in through the medicare enrolment form. Whichever scenario applies, MHR gives us pause for thought about our health and the significance and meaning of the data it generates.
How are people deciding whether to have a MHR, or not? An analysis of the public-facing content of the MHR website showed that the reading level is too high for the general Australian population, which could limit accessibility for those with low literacy levels and difficulty communicating in English. A recent qualitative study reports that a sample of Australian women registered for MHR based on the benefits of having a digital health record that could be accessed by multiple providers but these benefits did not transpire in practice. These findings raise questions about whether Australians are accessing all the necessary information to make decisions about MHR, but also their expectations for how MHR might benefit their healthcare.
The emergence of this data alongside the looming deadline to opt out of MHR has sparked debates within the walls and listserv at Sydney Health Ethics. In this post, members of Sydney Health Ethics share their reflections on the ethics and practicalities of having a government-led electronic health record.
Why do we need electronic medical records?
Prof Lyn Gilbert
An ideal universal electronic health record (eHR) system could provide significant benefits for individual healthcare, health service improvement, disease surveillance and public health outcomes.
Let’s imagine an ideal system:
It would contain an individual’s health records from birth to death: including immunisations; GP and specialist clinical notes (including relevant family, occupational and travel history; results of laboratory investigations and imaging (or links to laboratory/radiology information systems); medications and allergies (or links to pharmacy information systems); hospital discharge summaries; next-of-kin contact details; and advanced care directives.
Access to such a system would be via a password provided by the individual patient/data owner with the potential for it to be over-ridden under well-defined circumstances, e.g. in an emergency, by a healthcare provider whose identity would be recorded and who would therefore be accountable. It could incorporate health alerts or reminders and personalised decision support systems. And the patient would be able to access and, if necessary, correct or delete some aspects of the data.
Such a system would integrate, and make rapidly accessible to health care providers, information that currently exists, for most of us, in many separate systems: immunization registers; GP and hospital eHRs; medical and pharmaceutical benefits scheme (MBS, PBS) and private health insurance databases; private and public laboratory and radiology information systems.
It could eliminate unnecessary duplication of laboratory investigations and imaging; reduce unnecessary polypharmacy; warn of dangerous medication errors or interactions. It would provide GPs with information required to provide continuing care after a hospital admission and allow hospitals to monitor rates of post-discharge adverse events (and implement improvements to reduce them).
There would be innumerable legitimate uses of “de-identified” (if at all possible) data for surveillance and research e.g. to improve health service delivery and treatment outcomes; monitor disease epidemiology and devise preventive strategies. Currently, linkage of existing databases is time consuming and expensive and a significant barrier to surveillance and research.
It is obvious from the recent public debate that, in its current form, MHR is far from ideal. I suspect that such a system is still a long way off.
MHR Fail: Not what it is but how it’s done
Jay Lee, Centre Administrator
On Monday 16 July, the first day of opting out period for MHR, I was shocked to learn from a colleague about MHR for the first time. The first question that popped in my head was that, for a project of such importance with potentially huge impacts on the lives of millions of Australians, why haven’t I heard of this earlier? I haven’t been living under a rock. I have taken public transport and I’m on Facebook every day like many other people.
I started researching. Imagine how many lives can be saved if patients’ medical history is easily accessible during emergencies, or throughout the treatment of a serious illness when different specialists or health care providers are involved?
However, I opted out the next day. What I have problem with is not the intention of having my medical history stored in one place for my benefit. My problem with is how it’s being done. Here are the red flags I see with MHR:
Centralisation. The complete medical history of millions of people stored in a centralised system is a recipe for cyber security disaster. Remember Equifax credit data hack in US, Singapore’s health database stolen including their own PM’s, and the Australian Red Cross donor details leaked in our own backyard? The answer to this is readily available via blockchain technology. What MHR should have adopted is decentralised blockchain technology that is almost impossible to hack through the notion of distributed ledgers.
Trust. Why haven’t we been given the opportunity of opting in instead? Judging from past history, I am not convinced that policies will not change without notice. It is already said that MHR records are to be made available to insurance companies.
Considerations for an ageing population
Emeritus Prof Miles Little
Age, significant ongoing medical problems and potentially fatal allergies make me much more sympathetic to the concept of the MHR. So does my experience of practice – albeit many years ago. Despite the great advances in communication and connectedness, there remain problems for some people who need medical access in places outside their usual environment. I have the usual misgivings about data breaches and the embarrassment and discrimination they could bring against many people. I am even more troubled by the Australian habit of strangulation by bureaucracy, and would not expect this to evolve smoothly or expeditiously. Each person, however, has their own context, physical, moral and political, and their own level of trust – or, rather, level of distrust – in governance. If you think you might need it, stay in. If your level of distrust is high enough, you still can opt out.
Stigma, intersex people, and the My Health Record
Morgan Carpenter, PhD Candidate
Stigma and discrimination distort access to healthcare and are sometimes used to justify otherwise unnecessary medical interventions. For an intersex population, forced and coercive practices such as surgeries to “enhance” genital appearance in young children persist. My Health Record creates risks relating to the disclosure of health information to new parties. On an individual level, some people already report unnecessary questioning, examinations and discriminatory practices after disclosing an intersex variation to a healthcare provider. At a population level, differing clinical and community research priorities raise concerns about secondary data from My Health Records being used to justify early surgeries and facilitate genetic de-selection, instead of identifying long-term outcomes, tackling stigma in access to healthcare, and documenting human rights violations.
Continuity of care equals continuity of health records
Dr Narcyz Ghinea, Research Fellow
While privacy concerns are real, so are the potential benefits of having health records stored in a singular location. Continuity of care is a major challenge in a largely fragmented health system. Patients often shuffle between different specialists and GPs, between different medical centres, between the public and private system, and between the hospital and community settings. The transfer of accurate information between these points of contact with health care providers is crucial for optimum care. An integrated and patient-centric health care journey goes hand in hand with an integrated information system that is not siloed according to administrative units. For young, healthy individuals who speak English fluently, this may seem much ado about nothing. However for patients suffering multiple co-morbidities, who are on multiple medications, or who can’t communicate well in English, a central health record is invaluable. Take for instance the case of a patient who has collapsed at home, doesn’t speak English, and is rushed to the emergency department in an ambulance. It may be some time before such a patient can give doctors an accurate medical history, which can mean the patient may miss out on critical medicines they are currently on, may be overdosed due to a double up, or may be given a medicine that interacts severely with other medicines the patient is currently taking. Having all this information in an online health record can save much unnecessary angst at these transitions of care, and is certainly superior to the ad hoc manner in which this information must otherwise be collected – such as trying to call the patient’s GP, hoping they are available, and assuming the GP has an accurate record themselves.
The Australian Senate’s Community Affairs Committee held an inquiry into My Health Record. You can read the recently released report here.