Who is serving whom?

What are we going to do with the data once we have collected it? Often, when I ask this question, the answer is vague.

In the race for big data the purpose has sometimes been forgotten. It’s like doing research without formulating a question first.

I wonder who is serving whom: Are IT systems supporting health providers or are we increasingly following rigid templates and blindly harvesting information for reasons we often don’t even understand?

It is time to pause and gain a better understanding of where we want to go. How can data and IT best support patient care and public health into the future?

What can stakeholders agree on with regards to secondary use of data? Where are the trap doors?

The outcome should always be a win-win, or mutual benefit.

It’s not just the My Health Record we should be concerned about

It’s often been said, the Australian My Health Record is not a finished project. It is evolving and has, indeed, lots of potential to improve and streamline patient care. Sadly, the privacy issues that have haunted the project for years still seem to be unresolved. And when it comes to secondary use of patient data, there’s more to come from a different direction.

Back in 2013 I wrote this in a blog post about the My Health Record, then called the Personally Controlled Electronic Health Record or PCEHR:

“The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.”

Five years later and there are still ambiguities about when, how and for what reason law enforcement agencies and other non-medical parties can access the national My Health Record system. This should have been crystal clear by now. Here’s is what I posted in 2015:

“(…) at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out. (…) The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians.”

When asked about this issue at yesterday’s Press Club AMA president Dr Tony Bartone indicated that he is prepared to push for legislative amendments to improve the confidence of Australians in the My Health Record.

I was glad to hear this. I’m all for amendments of the My Health Record legislation but at the same time the Department of Health is on a journey to get its hands on GP patient data – and this is unlikely to change.

For example, the Department of Health is preparing a new data extraction scheme, to be introduced in May 2019. To remain eligible for practice incentive payments GP clinics have to agree that de-identified patient data will be extracted from their clinical software by, perhaps, Primary Health Networks. From there the data may flow to, possibly, the Australian Institute of Health and Welfare, the organisation responsible for the secondary use of data in the My Health Record.

If this scheme goes ahead, government organisations will begin to take over data and quality control of general practice. The argument will be that it is in the interest of the health of the nation. Perhaps it’s my well-worn tin foil hat, but I have a sneaking suspicion what I will be blogging about in the years to come.

This is how your data in the My Health Record will be used

On Friday the Federal Government quietly released its long-awaited framework for secondary use of information contained within the My Health Record. It will generate discussion as it is controversial.

The release of the framework to guide the secondary use of My Health Record (MyHR) system data comes just months before the participation rules for the Australian national health record change from opt-in to opt-out.

Consent for secondary use is implied if consumers don’t opt out of the MyHR. In other words, people need to take action if they don’t want their health data to be used for purposes other than direct clinical care.

To stop information flowing to third parties, consumers will have to press the ‘withdraw participation button’.

Another hot topic is the use of the data by commercial organisations which, interestingly, is permitted under the framework, provided it is ‘in the public interest’.

And, as expected, one of the main purposes of secondary use is the monitoring of outcomes of care. It remains to be seen what this will mean for the interaction and relationship between consumers and health providers.

The release of data is expected to commence from 2020.

Commercial use

The Australian Institute of Health and Welfare (AIHW) will act as the data custodian.

A ‘My Health Record secondary use of data governance board’ will assess applications for access to MyHR data ‘based on the use of data, not the user’.

Any Australian-based entity, except insurance companies, can apply to get access to the data. The board will take a ‘case and precedent’ approach to determining what uses will be permitted and not permitted for secondary use.

Although information in the MyHR cannot be used for commercial purposes, such as direct marketing to consumers, data may be released to commercial organisations if they can demonstrate that the use is consistent with ‘research and public health purposes’ and is likely to be ‘in the public interest’.

I suspect that this backdoor will be in high demand by third parties such as the pharmaceutical industry.

The board can permit the linkage of myHR data with other data sources once the applicant’s use is assessed to be of public benefit. In an example provided in the framework, researchers link MyHR information to a database of clinical trial participants to investigate hospitalisations, morbidity and mortality.

Data may also be linked to other datasets such as hospitals, MBS, PBS and registry data.

Examples

The framework gives examples of the use of health data for secondary purposes, including:

  • Evaluation of health interventions and health programs (e.g. determine if an intervention or service is generating outcomes/benefits consistent with funding approvals)
  • Examining practice variations for the purposes of quality improvement or adherence to best-practice guidelines at a health service level
  • Construction of clinical registries (e.g. create or supplement data in clinical registries to evaluate the effectiveness of interventions)
  • Improvement of existing health services and development of new services
  • Enhancing post-market surveillance insights for new products
  • Improvements to patient pathways research
  • Increased visibility and insights into population health matters
  • Development of government health policy
  • Develop/enable technology innovations
  • Preparation of publications
  • Recruitment to clinical trials (e.g. identify people who may be suitable for a new product/service)
  • Development of clinical decision support systems (e.g. link data on individual’s health with best practice to influence treatment choices)
  • Health services research relevant to public health (e.g. examine the health service utilisation patterns for potentially avoidable hospitalisations; research that leads to changes in other government policies, such as welfare, and ultimately reduces impact on the health system).

A review will be performed after two years, which may identify additional uses.

The MyHR 'withdraw participation button’
Consumers can stop their My Health Record (MyHR) data being used for secondary purposes by pressing the ‘withdraw participation button’.

Not permitted 

The following uses of MyHR data are not permitted:

  • Determination of funds allocation for a health service (e.g. set the level of funds allocated to an individual community health service)
  • Remuneration of individual clinicians (e.g. to make/modify payments)
  • Individual clinician audit (note: this does not exclude examining practice variations for the purposes of quality improvement or adherence to best-practice guidelines at a health service level).
  • Direct marketing to consumers
  • Assessment of insurance premiums and/or claims
  • Assessment of eligibility for benefits (e.g. use by Centrelink and/or the Australian Taxation Office to make determinations relating to an individual)
  • Criminal and/or national security investigations, except as required by law (e.g. use to investigate the interactions of individuals with the health system as part of assessing their behaviour).

Withdrawing participation

Data that has been removed or classified by consumers as ‘restricted access’ will not be retrieved for secondary use purposes. Similarly, when people cancel their MyHR record, the data will no longer be used.

Consumers can stop their data being used for secondary purposes by clicking on the ‘withdraw participation button’. It is expected that a dynamic consent model will be introduced later, which allows consumers to give consent for secondary use on a case-by-case basis (which would also open the door for the use of identified data).

In the light of the recent Facebook Cambridge Analytica Scandal I suspect that many consumers will press the button – or will be advised by health professionals to do so.

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 ~ Unknown

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.