Where did our health data go?

4 minute read

Government Informatics MyHealthRecord

By

Dr Edwin Kruys

It took a while, but the Department of Health is now inviting submissions on secondary uses of MyHR data, writes Dr Edwin Kruys

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.

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Lou Lewis
Lou Lewis
6 years ago

When the concept of a MyHealthRecord was first mooted ( it was called something like a PCEHR) I went to a meeting and was left with the impression that this was an Australia Card under a new guise!
I voiced my opinion that I thought that this system was not only a tracking system of your health but also a tracking system of where you went for holidays, which chemists you went to, and even if you did or didn’t dispense the prescription given to you by the doctor were also known by the software operators.
The more I read about this system the more convinced I am that it will not be used just as a health record but it’s information will be used to help insurance companies in regard to claims or in regard to premiums depending on how many times a patient visits a doctor and for what reasons, it can be also be ‘sold’ to marketing companies and of course be hacked and make identity theft is easy as pie, as all your information such as date of birth, address, full name, usually names of spouses and children, and the Medicare number and possibly your banking details will be available to cyber criminals, given to them on a platter!
The people who spruik this intrusive system always tell us how good it is for us to all be linked so that we will receive,as patients better healthcare, but they fail to inform the patient of the many other uses of data collected via the MHR.
The Government and the bureaucrats were so concerned that so few people were opting into the system that they decided to make it an opt out system, knowing that human nature, being what it is, would be less likely to opt out of something and to opt into something, thus having millions of people accepting this system and not bothering to see it for what it really is.
A lot of people tell me that Big Brother knows everything already anyway, so why worry!
Well that’s not good enough for me, because there are a lot of things that Big Brother doesn’t know about all of us at this stage, but we will just be making it easier for Big Brother to implement its surveillance on its citizens.
Already we know that our law enforcement agencies can actually see and hear people remotely via their smart TVs and also can track people via their smartphones. But so do the cyber criminals!!
The recent selling on the dark web of Medicare cards doesn’t seem to have ‘troubled’ the government, and their excuse is that it wasn’t a true hack but that someone, somehow, got access to these cards and since they were asking a small price ,they were amateurs! The only amateur thing about this was the fact that the perpetrators were asking such a low price! But we can’t discredit the possibility that this could have been a ‘test run’ to see if there was a market for Medicare cards.
My advice to all my patients is to opt out of the MHR but if they don’t I certainly will not be contributing anything to their MHR and if they are not happy with that and they can find another doctor.
I really think that we must look at our privacy in a more serious way, and not give it up for the possible benefit it may have in the event we have a catastrophic medical disaster. The proponents of the MHR are playing on the fears of people just like the proponents of anti-vaccination are playing on the fears of people!
As an old Hollywood director used to say “include me out’!
Cheers
Lou

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