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Saturday, September 15, 2012

eHealth Ontario Diabetes Registry is no more

A variation of this article in whatever edition of the Toronto Star I saw, was headline news.  The story line in the current online edition says"Diabetes Registry obsolete, ehealth tells liberals". The headline I saw on the shelves in the grocery store at around 10:00am this morning was something like "eHealth Ontario Axes Diabetes Registry". The twists and turns in this story are many and varied.  I remember the eHealth Ontario procurement and spending scandal in 2009 mostly because I had just starting working towards a graduate degree in eHealth (or Health Informatics) at the time and I was beginning to feel a lot of regret about the name of my degree. The real concern here should be about people who have diabetes and the epidemic this is now becoming globally - not some provincial political hot potato, or football, or whatever metaphor pleases you.

I was studying the clinical efficacy of using personal health records to manage diabetes, looking for systematic reviews of the literature in the Cochrane Collaboration.  They were not many because they are not many clinical trials involving diabetes and electronic medical records (let alone personal health records).  Yes I looked on the clinical trials registry site as well - clinicaltrials.gov   and found a rare few clinical trials, mostly involving large hospital systems that had electronic health records in the United States. I had learned in my courses that clinical trials present the highest form of medical evidence, exept for meta-analysis or systematic reviews, which is a composite study of all the best clinical trials.

It was when I was studying the project management issues in a mobile application for managing type II diabetes, that I came upon the understanding that clinical efficacy should precede business opportunity. See the COMPETE studies at McMaster. In healthcare, the return on investment is improvement in quality of life, but why spend millions on a system because it is believe to be clinically helpful, when the evidence for the actual efficacy is not in yet.  There were experiments and studies that did show promise for this, and maybe they showed promise because they were all small studies and easy to manage.

We were aware that a smartphone or mobile solution for persons with diabetes tracking and managing their condition always seemed to involve a triage person or nurse practitioner who monitored the data flows from the patients.  York University's Department of Health is now started a course of training for Health Coach Professionals, which was part of the subject of my last blog post on a consortium of academics, business and health organizations to develop the open source OSCAR EMR and it's companion PHR call MyOSCAR.  It is this kind of triage person who I think could really help fill the gap between the patient with diabetes using the smartphone or the computer, and the personal health record or electronic medical record where data measurements and journaling provide the tools necessary to self-manage the condition.  A coach is really needed to get people to exercise, eat well, adhere to regimes of all sorts, etc.

Later in 2011 when I was researching the system architecture of personal health records systems in Ontario and their relationship to the national blueprint architecture of the Canada Health Infoway, that main benefit for using them would evolve in the prescription model that physicians currently have with their patients.  A personal health record system could be prescribed to a patient, because of the clinically proven benefits of using them to manage the condition. Again, this involves the evidence based medicine preceding the business model or expediency.  As well, the prescription model maintains the traditional trust between physician and patient, and as far as I know, diabetes is not something you want to try and handle on your own, without professional guidance and help.

When in 2010 we learned eHealth Ontario was going to create a Diabetes Registry for all Ontarians, I for one thought they really did not know what they were getting themselves into.  It is not that I am proved right, it is just that technology projects are often started for the wrong reasons, and pulling the plug on them, before trying to fix the short comings, is the right thing to do.  Wished it could have turned out better for the eHealth Ontario people, CGI, and I suppose the Liberal government, who I know have the patients in Ontario and their health in mind first.