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.
Research and public health
It seems reasonable to use the information in the MyHR for research or public health purposes with the aim to improve health outcomes. The access, release, usage and storage of the data should obviously be safeguarded by proper governance principles.
A good idea mentioned in the paper is a public register showing which organisations or researchers have requested data, for what purposes, what they have found by using the data and any subsequent publications.
I hope the MyHR health data will never be used for e.g.:
- commercial purposes including by insurance companies
- performance management or pay-for-performance systems
- sharing or creating identifiable information for example via integration with other sources
- low value research
The My Health Record is far from perfect but still has much to offer. Unfortunately it has an image problem and its value proposition will need to be clearly communicated to health professionals. There are also several loose ends that need fixing, such as workflow challenges and the medicolegal issues around uploading and accessing of pathology and diagnostic imaging reports.
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.
You can complete the public survey here. Submissions must be received no later than midnight Friday 17th November, 2017.