Where did our health data go?

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.

Research & 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.

5 thoughts on “Where did our health data go?

  1. All,
    See my blog for the results of a very relevant poll!

    Sunday, October 22, 2017
    AusHealthIT Poll Number 393 – Results – 22nd October, 2017.
    Here are the results of the poll.
    Should ‘Secondary Use’ Of Patient Data Held In The myHR Require Explicit Consent Of The Individual Concerned?
    Yes 95% (147)

    No 4% (6)

    I Have No Idea 1% (1)

    Total votes: 154

    It seems pretty clear individuals want a say about the use of their myHR data

    Any insights welcome as a comment, as usual, especially regarding what might be done to have consent be the norm?

    A really great turnout of votes!

    Again, many, many thanks to all those that voted!

    David.

    Cheers

    David

    Like

  2. Hi Edwin Just let patients decide with informed consent. It is pretty simple they can complete an on line form. All this is about is to show there was consultation and the Government will do its own thing anyway.

    Like

  3. Edwin – referred to your blog in an upcoming blog:

    My remarks were short after quoting your last para.

    “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.

    —– End quote

    Cheers

    David

    Like

  4. We would also hope that evaluation of MyHR data was not accessible to drug company’s for any/&/or marketing purposes, especially given all of the Pharma restrictions imposed on GP’s – highlighted irony – especially in the face of Pharma outlets prescribing rights’ oh such a nightmare for GP’s (read) GP’s being sued for data breaches?????

    Like

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