Tom Bowden Offers A Way Forward For Digital Health Now We Know Just How Badly The #myHealthRecord Has Failed.

Here is his paper - comments are mandatory!

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Changing the Direction of Electronic Health Record Sharing

By Tom Bowden

I have spent much of the past five years studying shared electronic health records in pursuit of  a PhD at Macquarie University, while under the supervision of Professor Enrico Coiera.  Since retiring as Managing Director of HealthLink a year ago I have been working on this full-time. Why? Because I have realised for many years that sharing of patient records is a complex issue that will one day need to be solved properly.  The views below are my own, not those of Macquarie University nor any of its staff.

My view of  My Health Record (MHR) is summed up by a quotation attributed to Henry Mencken  “For every complex problem there is an answer that is clear, simple, and wrong”. 

I believe that the problem really started with Tony Blair’s infamous statement  “If I live in Bradford and fall ill in Birmingham, I want the NHS to be able to treat me," Blair’s statement marked the introduction of The NPfIT (the National Programme for Health Information Technology), an ambitious programme launched in 2002 with an initial budget of some £6.2 billion. The core aim of the NPfIT was the introduction of a Pan-UK integrated electronic patient record system. It ended up costing at least twice the budgeted amount and was quietly mothballed in 2011.  It was a disaster. It misjudged society’s interest in sharing personal data and it grvely underestimated the level of complexity required to do so.

Before NPfIT’s closure, Australia and a number of other countries announced “Where Britain goes we go” and electronic health records mayhem unfolded.  To Australia’s credit (I suppose) she has tried really hard and exhausted every possible means to develop a ‘nation-scale’ EHR.  Alas or fortunately, depending upon your point of view, the options are now exhausted and continued dogged pursuit without careful re-evaluation at this point would constitute a major strategic error.

And so the question remains; what do we do now?, withdraw the system?, let market forces prevail?, call an end to the Cathedral model and replace it with a bazaar? Or is there a third way to tackle this?  I contend there is a middle-out/third way available to us.

The first step toward correcting this muddle, is I believe, already being taken, with the voluntary enrolment of older sicker patients in a federally funded patient enrolment programme. In my view, each enrolled patients should be strongly encouraged to opt to have their GP records opened up for full access by approved parties, (approved by the patient of course) allowing all of those parties treating the patient to have a complete and up-to-date understanding of the patient’s exact situation.  The shared (GP-held) record  should be linked to e-prescribing and care plans, with the GP record the hub of all of the patient’s key health data, with external systems drawing on this data data hub to populate their more specialised systems and then feeding summary data back into the hub. 

Following is a quote from the foreword of ‘Models of Patient Enrolment’

produced by the Australian Primary Health Care Research & Information Service in May 2009

For people and communities, formal links with an identifiable source of care enhance the likelihood that long-term relationships will develop; that services are encouraged to pay more attention to the defining features of primary care; and that lines of communication are more intelligible. At the same time, coordination linkages can be formalized with other levels of care – specialists, hospitals or other technical services – and with social services.

With respect to coordination and continuity of care, a system in which patients are registered with a GP appears favourable in that it offers a greater likelihood that medical information will be stored in one place, than do systems without patient lists. A patient list system is not sufficient [for coordination and continuity], however. Individual GPs need to keep comprehensive medical records and maintain good working relations with other health professionals in primary and secondary care.

In Australia, the relationships between service providers and between providers and patients are affected by the absence of registration of patients with general practices. Although most patients get their chronic disease care from a single practice, the lack of a formal relationship leaves GPs uncertain about the extent of their responsibility for ongoing care and care coordination, particularly in the area of psychosocial care.”

While the initial plan to enrol patients is only for those over 70, this could readily be expanded to include other groups of high needs patients, including those pregnant, those on invalids benefits and in a range of other high-needs categories.

The vast majority of patients however, in my view, have no need for such a system (although it should be readily available to them when they do need it).  What those patients need is to begin managing their own healthcare journey using a patient portal or patient app. 

Patient Portal/Patient App technology is flying along in other countries where large numbers of people are using a patient portal or patient app to manage their own healthcare. Uses include; viewing their pathology results once their GP has seen them, viewing those results in context (historically and in relation to other tests), requesting repeat prescriptions, making appointments, asking questions, receiving recalls and reminders, telehealth and it can be used to manage a patient’s own health as well as the health of children or elderly parents.

Patient portal technology is also well suited to forming an innovative and competitve market of new and existing suppliers, able to grow very quickly.  In New Zealand approximately 50% of general practices already offer their patients  access to their patient record data via a patient portal and the remainder of practices are under pressure to do so. Some practices have more than 50% of their patients connected to them via their patient portal.  Further afield, Veterans Affairs (USA) introduced patient portal access in 2003 and has just announced that five million patients are now connected. 

Isn’t this the sort of technology we want?  Applications that people will want to adopt, because they are useful and very easy to use.

In order to support full shared records both for enrolled patients and patient portals/patient apps for the rest, rigorous standardisation and independent validation of all standards will be key to success.     At the top of the list also would a robust privacy framework – I would advocate using the Caldicott privacy protocols and framework which has been highly successful in the UK- (post NpfIT).

This is an outline of what I would propose we do.  I am happy to discuss and debate it further in any forum.

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Thanks Tom.

David.