This appeared over the weekend:
Where did our health data go?
Data is like garbage, you’d better know what you are going to do with it before you collect it ~ Mark Twain
It took a while, but the Department of Health is now inviting submissions about the various ways digital health information in the national My Health Record (MyHR) should, and could, be used.
By law information in the MyHR can be collected, used and disclosed ‘for any purpose.’ This ‘secondary use’ of health data includes purposes other than the primary use of delivering healthcare to patients.
The consultation paper is not an easy-read and I wonder how many people will be able to make heads or tails of the document – but then again it is a complex subject.
Nevertheless, secondary use of health data seems to make sense in certain cases. As the paper states:
“Secondary use of health data has the potential to enhance future healthcare experiences for patients by enabling the expansion of knowledge about disease and appropriate treatments, strengthening the understanding about effectiveness and efficiency of service delivery, supporting public health and security goals, and assisting providers in meeting consumer needs
Risks and red flags
There are risks. For example, I would be concerned if insurance companies or the pharmaceutical industry would get access to the data or if the information would not be de-identified.
The consultation paper also mentions performance management of providers, and driving ‘more competitive markets’. These are red flags for many health providers because there is little evidence these purposes will benefit patient care.
For example, performance management has gone wrong in the British Quality and Outcome Framework pay-for-performance system and has resulted in:
- only modest improvements in quality, often not long-lasting
- decreased quality of care for conditions not part of the pay-for-performance system
- no reduction of premature mortality
- loss of the person-centeredness of care
- reduced trust in the doctor-patient relationship
- loss of continuity of care and less effective primary care
- decreased doctors morale
- billions of pounds implementation costs
According to the consultation paper it is ‘not the intention’ to use MyHR data to determine remuneration or the appropriateness of rebate claiming by healthcare providers.
Interestingly, a similar discussion is currently happening around the changes to the quality improvement incentive payments (PIP) to general practices and the proposed requirement to hand over patient data to Primary Health Networks without, at this stage, a clear data framework.
The full blog is here:
Edwin’s last paragraph says it all!
“Knowing exactly what MyHR data will be used for and by whom will be an important factor for many in deciding whether to participate and at what level. ‘Where did our health data go?’ is a question health professionals and consumers should never have to ask.”
Without that and having consented to the use of the data this has the potential to totally destroy trust in the myHR – which is flimsy now!
David.
1 comment:
So, unless you have a clinically important condition which might benefit from a myHR, by deciding to not opt-out you take on
a/ an unknown but real risk of your data being taken during a security breach and
b/ a known risk that the data might be used for future purposes that are currently not disclosed and that this will occur without seeking your renewed consent. In other words you consent to unknown future uses of your data by 3rd parties. Surely no one would object to that .....
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