Thursday, September 27, 2012

I Am Struggling To Know Just Why This Article Was Commissioned by The MJA. Hardly By A Recognised E-Health Expert And Contains No Real News.

This appeared a week or so ago (behind a paywall sadly - hardly a way to get views into the public domain!)

e-Health records: beware of assumed benefit

Ray N Moynihan
Med J Aust 2012; 197 (6): 319.
doi: 10.5694/mja12.11282
Ray Moynihan rings some notes of caution coming from experiences elsewhere
Change is perennial in health care, but some changes are more significant than others, like the personally controlled electronic health record (PCEHR) currently being rolled out across Australia. An ambitious reform, its much-touted benefits are safer and more effective care, less duplication of unnecessary tests — and, of course, enhanced datasets for researchers. As with most things medical, potential adverse consequences can attract less attention than promises, so it may be timely to explore a few experiences elsewhere.
In 2007, the United Kingdom rolled out the Summary Care Record as part of the much bigger National Health Service National Programme for IT overhaul. Within the broader reform, a personal electronic health record system called HealthSpace was introduced, allowing people to view their record and record information like blood pressure readings. However, an independent evaluation of the system in 2010 was scathing.1
Of those invited to open an “advanced” HealthSpace account (which allows access to the summary record and opportunity to interact with health professionals, on top of the “basic” account containing an individual’s data), only one in a thousand registered, compared with predictions of 5%–10% uptake. Many people found it “neither useful nor easy to use”, and its “functionality aligned poorly with their expectations and self management practices”.1 Stressing the limitations of their evaluation — informed by experiences of very few patients — the researchers identified a fundamental flaw in the concept. HealthSpace was envisaged primarily as a “data container” to be “deployed”, rather than part of a dynamic and interactive “sociotechnical” network.
Led by Trisha Greenhalgh from the Healthcare Innovation and Policy Unit at Barts and the London School of Medicine and Dentistry, the evaluation team argued that unless the e-records “align closely with people’s attitudes, self management practices, identified information needs, and the wider care package ... the risk that they will be abandoned or not adopted at all is substantial”.1 Early in 2012, Greenhalgh and colleagues published a wider evaluation of the experiences across England, Scotland and Wales,2 explicitly offering lessons in introducing electronic health record systems. A key finding was that implementation had “rarely gone as planned”.
Lots more here:
There are 5 references provided.
I have described the NEHRS / PCEHR as an ‘evidence free’ initiative (especially in terms of proven utility and benefit) regularly for years so the title hardly tells us something we did not know.
See here:
and here:
Additionally it is not made clear what is being done in Australia is different to what has been done overseas and so did not offer not much utility.
There is no news at all here to anyone who follows the field. It also struck me to ask just why wasn’t Prof. Enrico Coiera (who is cited in the article and is an expert) or another e-Health expert, asked to provide this review if one was needed?
Indeed, I would also argue a lack of analysis and discussion, in context, of just what is going on now with the NEHRS / PCEHR leaves this article rather incomplete.
Interestingly Professor Greenhalgh’s (also cited) analysis of large national programs, such as the NPfiIT and successors, and failure to learn the lessons available is quite devastating. While similar in some aspects of course the NEHRS is fundamentally different and it is hard to know just how much transfers usefully - but certainly some generalities do!
I have written a blog on this paper:
The full paper is found here now:
The best bit is this two sentence quote from the abstract:
“Findings: National eHealth programs unfold as they do partly because no one fully understands what is going on. They fail when this lack of understanding becomes critical to the programs’ mission.”
How true!
Of course, as I mentioned above, there is also an College (ACHI) which has 30 or 40 Fellows who know a fair bit about this topic as well. There are plenty of experts around if you bother to look!
It’s all a little odd that none of them were asked - or if they were that they declined.
What is needed from the MJA - if they must commission articles - is commentary and insight from established Health IT experts who are recognised by the clinical community as such. Mr Moynihan has done some good and useful work in a range of areas in seeking to keep 'the establishment' honest, but, to my knowledge, has not been active for any significant period in the e-Health space. Others are better equipped to respond to such commissions in this space I believe.
Bottom line - we need authoritative commentary on e-Health in our leading medical journal and it should also be peer reviewed given the mess we now see. This really is not good enough. Pity about the accesses restrictions also!

1 comment:

Cris Kerr said...

Regarding “Findings: National eHealth programs unfold as they do partly because no one fully understands what is going on. They fail when this lack of understanding becomes critical to the programs’ mission.” ... I agree. Australia is yet to define a long-term honourable ehealth mission.

Regarding the MJA article: Ray has demonstrated he is a concerned citizen who has expertise in health industry practices and who can readily relate his expertise to ehealth.

I'm not professionally qualified but I'm also a concerned citizen who relates my experience of the health industry to ehealth.

We should not forget that every adult and child in this country will potentially opt-in to (or potentially be forced to opt-out of) an ehealth record in the form of a PCEHR.

Ehealth should be at the top of the public interest agenda.

It should be everybody's concern, and it should be everybody's business to get it right.

If anything we need more, not less, concerned citizens in this country, whether they have ehealth or medical expertise or not, airing their views publicly about ehealth based on their own personal wealth of experiences, because if they don't, others will continue to misrepresent their views on their behalf.