Sunday, June 28, 2015

The PCEHR Automatic Opt In Trial Might Become A Rather Messy And Complicated Business.

A couple of weeks ago I wrote a blog on the proposed Opt-In/Out PCEHR Trails.
You can read this and the 26 comments here:
Thinking a little more about all this the messier it seems this will all be.
To me there are some really interesting issues - and remember just how mobile Australians are -are around choosing and then keeping track of the trial population.

Either it will have accepted that, at best, most of the individuals in an area will be opted out - or everyone in the area will need to be tracked in some hopefully inexpensive and effective way. Frankly option 1 is the only feasible approach so we will start with a trial that will be compromised to some extent.
Another interesting issue is being able to actually get in touch with every citizen, explain to them what is happening, and make sure that they do not want to be opted out. I can just see the ruckus that flows if people don’t understand what the letter or whatever from the Government means, only to find a record exists and has contents they are simply not happy with.
An associated problem is going to be how a clinician, in an opted-in area, handles access to the patient record when the patient actually did not know the record existed (It was Government mail and they just threw it out - and so on). There might be a legion of startled doctors and patients with all this.
The purpose of all this is to ask what readers think will be the biggest issues that the conduct of the proposed trials. I have suggested a few here and a few weeks ago. What do you think are going to be the stumbling blocks? and while typing how long do you think the trials should run and how should they be evaluated?
David.

5 comments:

Mayan said...

A major stumbling block is going to be reconciling the records from the different doctors people have seen. We've all changed GPs, or gone to a different one for an urgent matter when our regular GP was unavailable. Add to that specialists and pathologists, and it's a mess. Even just for the fact that people forget to mention things, or mess up dates in histories. Then you have people who may have changed their name or sex, which is likely to cause hiccups, assuming records are keyed to Medicare number.

That fact will also complicate the opt-out process. Slight changes could well see records from some practitioners scooped up, even though the person concerned has opted out.

As for the length of the trial, probably three years would be needed to see how the system copes with changes of records, and also following through the progression of a diagnosis.

A point that worries me about the whole concept of PCEHRs is that they might become a permanent record, with no space for things scrolling off the screen of relevance, and probably with limited scope for people to make corrections or deletions. Many things that appear on a person's medical records lose importance and fade to irrelevance with the passage of time or significant personal changes. Some of those things might be evidence of youthful (or not so youthful) foolishness that, once left behind, should not be kept on file, for all a person's medical service providers to see. The revelation of things like that has the potential to do real harm to people. However, that is a special instance of the wider concerns about the data gathering to which we are all subjected daily.

Anonymous said...

The only purpose for the trial is to see how many people complain about the PCEHR being opt-out. If very few people (as defined/decided by Health) make a noise, then it will be made opt-out nationally.

Anonymous said...

This is why there are experts in running proper trials. The average joe thinks something is too difficult so will be plagued by insurmountable problems. To experts, this is their bread and butter. How about we await the results rather than bitching and moaning about everything.

Anonymous said...

You have stolen enough Taxpayer "bread and butter" already with no evidence or value to speak of, and this is going all the back to the Health Connect days...

So, do all Australian Taxpayers a favour and,

QUIT ALREADY!

Anonymous said...

"This is why there are experts in running proper trials."

Really? I am unaware of any group with international expertise in the design and conduct of robust evaluation trials of e-health being involved in this. If they, are I'd love to know who they are. If your 'experts' are paid consultants or have no track record in e-health evaluation, then I find your faith in them surprisingly generous.