Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Monday, December 23, 2019

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.

6 comments:

Dr Ian Colclough said...

Hi Tom, it’s a challenging PhD. I would be interested to know your research question and the methodology.

Regarding your paper [Changing the Direction of Electronic Health Record Sharing] I think it would be advisable to succinctly state - What is the problem you are trying to solve?

Tom Bowden said...

Response to Dr Ian Colclough

My Research question is ‘Under what circumstances do emergency department clinicians look at ED patients’ pre-existing medical records, when they are available?’

We have ED visit data from a health region in which ED clinicians have direct real-time access to patient’s GP records. We have compared all ‘Lookup’ visits over five year period with a larger control sample. We compared the following characteristics; presenting condition, age, triage category, socio-economic status, gender and ethnicity. Results should be available for wider discussion in the first quarter of next year. We are also surveying ED clinicians to see if we can validate this data and to look at other factors such as system design.

In yesterday’s post I tried to tackle another question which is ‘Where to from here in a post MHR era?’ I feel it is incumbent upon the commentariat (us) to form an alternative view rather than merely congratulate ourselves for having been so clever as to accurately predict the current system’s demise and to sit back and wait for the next fraught attempt.

In my short paper (admittedly written rather quickly yesterday morning) I have pulled together some key themes that I think could form the basis of our next steps, i.e. toward a patient-held record for those largely healthy, thus helping people take a greater interest in managing their healthcare, but available in emergencies, plus a more sophisticated system opt-in system available to patients who need multiple healthcare providers to collaborate on their care. Both strategies are shown to work well in other environments and could combine nicely.

In terms of a process, I think we first need a contest of ideas and to agree what might or might not work at a high level before drilling into the detail. What we do not need is another strategy that is ‘clear, simple and wrong’ - We need something that delivers benefits to patients, healthcare providers and taxpayers – Now.

As a person who has spent most of his working life starting up businesses in complex fields, the last one took 25 years and was used by 15,000 medical clients, I do believe in starting with a clear, simple concept and then developing it further and working closely on the detail (a task that never ends).

Merry Christmas.

Dr Ian Colclough said...

Thanks Tom for your comprehensive response. All the best with your much needed research and a Merry Christmas to you too.

Long Live T.38 said...

This approach seems feasible under the right conditions. Create the clinical communication ecosystem then build any number of virtual health records for consumers.

I wonder though, with so much invested in large systems at state level are the likes of Cerner and Epic to become the defacto standards? In a word of Cloud delivery services is P2P now a pointless pursuit?

Can the current funding models accomodate this proposed approach?

Does this support consent in a federated country?

Anonymous said...

This sounds like a grab-bag of wishful thinking in an attempt to justify the need for ED access to the medical record.

The ED clinician rarely needs access to the patient medical record. They treat the presenting condition and move the patient on as quickly as they reasonably can.

Over 95% of presentations at ED do not require access to the medical record. Non-clinical technology people think otherwise in the mistaken belief access to the medical record will improve ED outcomes.

The ED addresses the presenting issues; massive trauma, shortness of breath, blurring of vision, loss of speech, paralysis of limbs, falling over, headaches, toothaches, chest pain, abdominal pain, back pain, constipation, painful urine, diarrohea, joint and back pain, burns, sudden deafness, sudden blindness, coughs, blood in the sputum, blood in the urine and faeces, tremors, hallucinations, depression, anxiety, overdoses, lacerations, concussion, abdominal pain, palpitations, dislocations, ......

.... ED deals with the immediate problem, stabilises the patient, endeavours to keep the patient alive and moves the patient on to the next port of call as quickly as possible.

Anonymous said...

@ 744 AM Yes, that's right. I don't have the time to ferret away in a medical record full of clinical information completely irrelevant to my immediate need.

My job is to treat the 'emergency' patient, sometimes that involves trying to keep them alive, resuscitate them and hand them over to the next appropriate team of clinicians - orthopods, burns, plastics, paeds, intensivists, whoever.

I will then record my findings, diagnosis, management and outcome and move on to the next patient. That is quite different from accessing a patient's medical record for information when the patient presents at the ED.

Technology people with no clinical experience seem to think they know best. They live in a fairytale world.