Here are the results of the poll.
Will It Be Useful To Data Mine The myHR As A Source Of Health Information To Guide Policy Development, Clinical Interventions And Funding Allocation?
Yes 2% (2)No 93% (115)
I Have No Idea 6% (7)
Total votes: 124
I think it would be fair to say readers believe the “information” in the myHR is not very useful.
A really great turnout of votes!
Again, many, many thanks to all those that voted!
David.
10 comments:
David, this could be resolved if the ADHA provided access to the data by an independent group to test if it can be mined and used. With 4 million active accounts there should be enough. It would at least demonstrate to the Kiwis if it is worth changing to
With respect, there have been 4,713,087 people registered for a MyHR. Not all have a myGov account or have nominated a service provider (GP, usually)
There have been 689,397 Shared Health Summaries uploaded since the system went live. Assuming each person who has a SHS has updated it once (if they haven't it's probably out-of-date and useless) there are approximately 350,000 active records.
That's about 7.3% of registrations and 1.4% of Australians.
After close to 5 years and $2b, I can't say it looks anything like a success.
Bernard, interesting figures as always. The ADHA CEO is floating this as a rich source of minable data and is encouraging various communities like those doing genomics and decision support that the TkMR is the answer, I am simply calling them out- prove it, based on his assumptions there should be sufficient data to run an inderpendant validation.
I wonder if that is a worthwhile undertaking before the tax payer is asked to hand over more money? I have no biases towards any outcome just would like to see evidence
10:44am That sounds a reasonable request. I am sure the Strategy is built around the availability of a rich source of semantic and mineable data. Let us see if the years of investment have any value, if they do then good to go, if not then good to go back to the drawing board.
Completely agree, show us some evidence Mr Madden
The myEHR data may be useful for big data type operations where you don't really care if you get something a bit wrong, you just want to spot a trend or association out of an ocean of data. At one point google was tracking flu epidemics by seeing where the google searches for flu like symptoms were coming from. Unfortunately they have a puddle of data rather than an ocean currently.
Its a different matter for individuals, it would be dangerous to provide individual decision support on anything other than demographics from MyEHR data because its incomplete, out of date and might even be on someone else on your medicare card!
I am sure the myEHR data would be salable however, maybe there is a secret plan to fix the budget deficit by auctioning it off to drug companies?
5:34 pm. Would be surprised if they did not provide it to third parties such as Insurance companies. This continues to be the case in the U.K, along with a number of concern raising undertakings with the likes of Google Deepmind.
I think the issue here is that the PCEHR now MyHR consistently makes claims around its clinical usefulness. It does not claim nor has it ever been discussed with the general public that personal private and confidential health information once surrendered to the government will be used for other purposes.
If it is My Health Record then surely I have ownership, the Government wants too use it, I am happy to license it for a period of time at a reasonable cost.
Another fine example of bureaucrats jumping into markets to fix things, only to end up making things worse. A year from now what state will secure messaging be in I wonder?
@6.48 AM "If it is My Health Record then surely I have ownership" - not so, the Government has ownership of your (My) Health Record. MY PERSONAL HEALTH RECORD however is different - you would have ownership of that. But looking at the IP Australia Trade Mark database I see that a number of the MY PERSONAL HEALTH RECORD trade marks were all cancelled / withdrawn from the trade mark database last December; presumably at the Government's request, presumably in exchange for some compensation.
Nothing like watching trust being buried. This is quite serious I feel the designs will be confused, the messages contrived and the stakeholders confused and iscolated yet again. Perhaps the ADHA could clarify ownership in its many forms and use.
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