Tuesday, April 16, 2013

The Evidence Free Nature Of the NEHRS / PCEHR Confirmed By Independent Research.

The following appeared last week.

Analysing past mistakes to manage health records’ futures

Dr Karin Garrety is a researcher at the University of Wollongong’s Centre for e-Health and is on a mission to uncover the worst eHealth decisions ever made – so that the next generation of eHealth implementations can be more effective.
"This is a really interesting time in the development of the internet and the development of information technology for use in health," she says.
“The people implementing these systems are coming up against problems that we haven’t encountered on this scale before. It involves very complex issues, and involves many different professional groups who have different information needs.”
Dr Garrety is part of a five-person team working on an Australian Research Council (ARC) funded Discovery project under the Human Society field of research.
Other researchers include Professor Ian P McLoughlin, a management expert from Monash University and Dr Rob Wilson from Newcastle University in the UK.
The project will document the policies and processes used by government employees who tried to bring in eHealth systems in both the UK and Australia and analyse the impact of these.
The result will be a retrospective, comparative study of five attempts to set up regional and national systems for sharing electronic health records in Australia and Britain.
“We’re looking at this from a socio-technical perspective,” she says.
Big System Failures
“The majority of people in England now have a summary care record,” says Dr Rob Wilson.
“But the program initially called National Program for IT and later rebadged Connecting for Health failed to deliver on the promise of modernising hospital IT in the UK, with just three installations in ten years.”
…..
Australian approach
Dr Garrety says that Australia hasn’t made the same top-down approach that began with a big, outsourced system.
“We are going a bit more bottom-up here, which has been much better,” she says.
“There are still issues where for example, clinicians feel that NEHTA has not consulted enough with them and so they feel they are out of the loop.”
Dr Garrety says that the focus on the PCEHR came “out of the blue.”
“The idea to have personal control over your own health record didn’t come out of research into what are the current information practices in the health system,” she says.
“A better approach would have been to ask, what is it that would help people do their work better - and then to build something up from what people would find useful to help them to deliver health care.”
Lots more analysis was here:

Now here:

http://ehealthspace.org/news/lessons-past-will-drive-health-records-futures

Not sure why it moved!

The italics are mine.
It is impossible to disagree with Dr Garrety’s conclusion and indeed, as is well known, NEHTA was planning for a much different Shared EHR before the NEHRS / PCEHR was suddenly, out of a clear blue sky, dropped upon them with a large budget but very little in the way of evidence support or indeed time to execute!
The last two paragraphs really say it all!
It does need to be pointed out that I made similar points a little while ago.
Exactly two years ago indeed - but it is nice to see some academic support!
David.

7 comments:

Terry Hannan said...

Re complex e-health inplementations real life experiences have provided us with some excellent guidelines for success. These come from Paul Biondich and Burke Mamlin of the Regenstrief Institute and their evaluation of the AMPATH project that led to OpenMRS. They state that these projects confirm that any successful national e-health system must have the following functionalities: collaboration, scalability of the system, flexibility, the facility for rapid form design, the uses of standards, web-based connectivity, low cost and most importantly, they must be clinically useful.
AMPATH Medical Record System (AMRS):Collaborating Toward An EMR for Developing Countries
Burke W. Mamlin, M.D. and Paul G. Biondich, M.D., M.S. AMIA Annu Symp Proc. AMIA 2005 Symposium Proceedings Page - 490

Bernard Robertson-Dunn said...

Dr Garrety says. “A better approach would have been to ask, what is it that would help people do their work better - and then to build something up from what people would find useful to help them to deliver health care.”

Notice here that "people" refers to health professionals, not to the average person in the street.

Dr Garrety is proposing a system that supports health delivery. This has great merit because it addresses a health delivery problem.

In contrast, the PCEHR has been proposed and sold as a system for all Australians, most of whom will not need one. This has distorted the problem into one of the whole nation's health information, a problem that does not need solving and has little value if solved.

IMHO, by making it personally controlled, by the patient, it has totally destroyed its focus and value.

It has also made the PCEHR a political issue and has created unrealistic expectations.

Anonymous said...

The article is removed from the site .... :( anyone got a copy plz ?

Dr David More MB PhD FACHI said...

Looks like it has moved..

Now here:

http://ehealthspace.org/news/lessons-past-will-drive-health-records-futures

David.

Karin Garrety said...

Thank you for your comment Terry. There are indeed some excellent lessons that could be learned from previous projects that could guide current and future implementations. However, the major problem, as we see it, is not so much a lack of useful knowledge, but the fact that the people who have that knowledge don’t get to have much input into the policymaking process. The people who set the e-health agenda in Australia (Health Ministers, DOHA etc) and those who have useful knowledge on how to proceed (health informaticians, those rare and valuable people who have in-depth understanding of both medicine and informatics) inhabit different social worlds, and the conduits through which the latter have been able to influence the former (advisory positions, the repeated rounds of sending submissions to committees) haven’t been very robust. There’s no shortage of great stuff on technology implementation in academic journals across a number of fields (informatics, sociology of technology, sociotechnical systems theory etc. etc). The problem is getting that knowledge into the situations where political decisions about processes, resources and deadlines are made.

Anonymous said...

A consumer’s view
I have registered for a PCEHR. Here is my feedback, as a consumer.
1) I like the concept that I can put details about health events in my life on this record – in one place, and have it accessed by my clinicians and potentially by my family members in the future, when I am old and doddery. A few discharge summaries, an implant or two, a medical condition that may be hereditary. Perhaps an alert that I am allergic to something. But I would prefer that it was put up automatically to my record, and that I could see it all, and then decide who I show it to – as a complete set, or choose components. At the moment, I feel that the access control is too complex to understand and put in place, that the clinician will miss something, or not trust it. Or the hospital or health service will not have the right processes in place to prevent lots of people from seeing my secrets. I don’t have anything to hide, but I may want to at some point.
2) I like that I can look at the record now and see a few MBS and PBS items, and my organ donor status that I had forgotten about – in one place. E.g. I can see when I last had my optometrist checkup by looking at when they did the online claim against Medicare. (But my optometrist tends to ring me and remind me when I am due). But I can also see two claims there for my child that have been mistakenly posted against me (because I claimed on my card) - a data entry error at Medicare perhaps? I know I should go back to Medicare and have this corrected, but the thought of the processes and phone calls to do this is daunting. I know that I can also ‘delete’ these from my record – but then they won’t appear where they should appear – on my children’s records. So this makes me wonder about the quality and use of the data that is dragged in from other systems. In the future I may also worry about pathology test results, medications and other things coming in – are they up-to-date and complete? Are the records actually mine?
3) Although I have a record, I have only looked at it a few times, because I am pretty healthy at the moment. I have entered some medications that I take, and an allergy. So perhaps I can’t see the value yet. If I get a chronic disease then the situation may change. But I also think that it is more likely that my clinicians will want to use their own shared records to manage my condition. I thought about setting one up for my parents, but they don’t use computers, and neither does their GP (he is older than them).
4) Overall, the rushed implementation of the system with its problems and issues has made me quite cautious – about the quality of the system, the data in it and who can access it. I want to sit back and wait until it gets working properly.

Trevor3130 said...

For your amusement/infuriation, colleagues, the Client Details to be sent in (by mail) in order to attend OP.
One thing, I'm already on the books at one of the other hospitals in that "network".
Another, I'd be feeling pretty annoyed if I'd subscribed to PCEHR and filled out those fields.
Think of the inbuilt inefficiency, when Centrelink can put together most of that stuff at the push of a button.
If someone wants to poke those pages at Ms Plibersek for next week's QandA, I won't mind.