Let’s not fool ourselves about the PIP QI

It looks like patient care and quality improvement have taken a backseat in the new Practice Incentive Program (PIP QI).

To be eligible to receive payments under the revamped quality improvement program, practice owners need to show Primary Health Networks (PHNs) that they are recording information such as smoking status or influenza immunisations, and hand over de-identified patient data to their local PHN.

It is important that practices record this kind of information but the requirements are set at a rookie-level – a bit like learning how to write, no, how to hold a pencil.

Not surprisingly, the new program is regarded by many practice owners and managers as ‘easy money’. I don’t blame them as the Medicare freeze has affected us all – but the Federal Department of Health is fully aware it is dangling a carrot in front of a profession in dire need of adequate funding.

It is unlikely that in its current form, PIP QI will improve the quality of patient care. The profession rightly has second thoughts: Is this the beginning of performance management? Is this part of the department’s general practice data extraction plan?

What’s next? As there is no transparent, long-term vision here, your guess is as good as mine. The department is playing its cards close to its chest and appears to be effectively applying salami-slice tactics.

Professional organisations should have been given more responsibility to execute an agreed quality improvement strategy, acceptable to all stakeholders, including custodianship of patient information and access to raw data.

This was however clearly not on the department’s agenda and professional bodies were not successful in reaching agreement on a profession-led solution (general practice needs a shared vision). As a result, the focus appears to have been on data extraction.

After having been postponed twice, the practice incentive program has now been launched, even though several best-practice data governance principles have not yet been met.

For example, practices have been given little insight into what patient data is exactly being extracted from their databases and what happens with it afterward.

Red flags about the scheme have been raised at grassroots level. When going live last week, there were, and still are, many unanswered questions.

The practice incentive program should be about improving patient care in an acceptable, sensible and meaningful way. I’m concerned the scheme will instead be remembered as a government data grab.

How to control the settings for secondary use of your My Health Record data

Now that over ninety per cent of Australians has a My Health Record, we need to start using it. That also means becoming familiar with the dashboard and settings. Most people are not aware that they can control who sees what information in their record.

For example, you have the option to switch off secondary use of data. Secondary use is when third parties use your health information for purposes not directly related to your care.

This includes public health policy development and research – but also many other purposes. If you want to know more, read my blog post about this topic.

When a new MyHR record is created, your data will automatically be shared for other purposes. If you do not want this, you need to click the ‘do not participate’ button.

Unfortunately, this button is not available under the ‘privacy & access’ tab where it should be so it may be hard to find. Look for the button at the bottom of the ‘profile & settings’ tab (see screenshot below).

Secondary use of My Health record data

It is your choice to share or not share your data. There is also a helpful video available with instructions on how to control settings for secondary use of data.

Welcome to the ‘open era’ of health information

“When I graduated, my medical notes were an aide-memoire to help me treat my patients. When I joined a group practice, I realised that my notes helped my colleagues and me treat our patients. Since computerisation, my notes and health summaries have helped me to write better referrals so that colleagues outside my practice can assist me in treating patients more effectively. Now that I can share an up-to-date health summary on MyHR, I realise that my notes can help my patients to achieve better outcomes from the health system, even when I am not directly involved.”

Dr Steve Hambleton, AJGP

Five years ago, in 2014, I wrote about OpenNotes because I thought it was a new and fascinating concept. I soon discovered that giving patients access to health records triggered strong emotional reactions: patients loved it and many doctors thought it was one of the scariest ideas ever.

Fast forward to 2019, and about 90% of the Australian population has access to the national My Health Record (MyHR). According to the Australian Digital health Agency over 80% of general practices and pharmacies, 75% of public hospitals, and 64% of private hospitals have registered.

It took a while, but Australia has sorted out most of the digital teething problems. A large part of what doctors do every day – from writing prescriptions to requesting tests – is now recorded and can be viewed by patients, other health professionals and researchers.

This is only the beginning. Secure messaging is one of the next big topics on Australia’s eHealth agenda. By 2022 patients and healthcare providers can communicate and share more health data than ever before via interoperable, secure digital channels.

Nobody is expecting this to be an easy journey, but I’m looking forward to the destination! Welcome to the ‘open era’ of health information.

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.

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.

Warning: digital challenges ahead

There were a few interesting tech news facts this week. I thought this one was interesting: a Dutch campaign group used a drone to deliver abortion pills to Polish women, in an attempt to highlight Poland’s restrictive laws against pregnancy terminations.

There was scary news too: a private health insurer encouraged its members to use a Facebook-owned exercise app to qualify for free cinema tickets. Not surprisingly, Facebook was entitled to disclose all information shared via the app, including personal identity information, to its affiliates.

But there was also this: Telstra has launched its ReadyCare telehealth service. For those willing to pay $76, a doctor on the other end of the phone or video link is ready to care for you. No need to visit a GP or emergency department.

The telecom provider will offer the service to other parties like aged-care facilities and health insurance funds. Telstra is aiming for a $1 billion annual revenue.

Digital revolution

Digital developments increasingly create new opportunities, challenges and risks, but we have yet to find ways to incorporate the new technologies in our existing healthcare system.

In an interview in the Weekend Australian Magazine Google Australia boss Maile Carnegie warned that the digital revolution has only just started and that Australia is not ready for the digital challenges ahead.

Carnegie said that 99% of the internet’s uses have yet to be discovered and although Australia is the 12th largest economy in the world, it ranks only 17th on the Global Innovation Index.

She said that Australia has become a world expert at risk-minimisation and rule-making. Unfortunately this seems to slow down innovation.

“We are either going to put in place the incentives and the enablers to create the next version of Australia as a best-in-class innovation country or we’re not,” she said. “And I think it’s going to be a very stark choice that we have to make as a community.”

Who’s taking the lead?

In the last ten years we have seen major progress in for example mobile technology, but my day-to-day work hasn’t changed much. Healthcare has difficulty harnessing the benefits of the digital revolution.

Is the industry leading the way and letting governments, software developers and other parties know what is required? Do we have industry-wide think tanks to prepare for the near future? Have we listened to what our patients need and expect from us in the 21st century?

Will more money fix the national health record? What’s on your wish list?

According to Pulse+IT magazine NEHTA wants to make their e-Health records system (PCEHR) more useful and usable for clinicians and consumers. A steering committee chaired by GP Dr Mukesh Haikerwal will meet next week for the first time.

When I expressed my enthusiasm on LinkedIn, the following two spot-on responses made me smile:

Agree Edwin lets hope. However from the look of the makeup of the steering committee it does not look like there will be much input from regular GPs and is mostly in house between NEHTA and DoHa.

Why didn’t NEHTA do this at the scoping stage (before a line of code was cut). Now they are trying to do this retroactively and hope that it works…. Nothing short of amazing….

My wish list

Minister for health Tanya Plibersek has announced yet more money today ($8M): pathology and diagnostic imaging will be stored in the PCEHR.

How to improve the uptake of the PCEHR by clinicians? I will send in my wishlist. Here it is:

  1. A public list should be made available of all organisations with access to clinical patient information
  2. Government and affiliated organisations are not allowed to use any uploaded clinical data for e.g. insurance purposes, audits, police/immigration/background screening etc. This needs to be spelled out in the participation contract
  3. Data mining and scientific research can only be performed after doctor and patient have given consent. This needs to be spelled out in the participation contract
  4. Remove the dreaded IP clause from the participation contract that states that all information can be used by the government world-wide, perpetually etc
  5. When health care organisations or individual clinicians no longer want to take part they must be able to remove all their uploaded clinical data from the database
  6. Ensure and facilitate that clinicians are not exposed to higher medicolwegal risks when participating
  7. Registration for the PCEHR as well as cancellation should be quick and easy
  8. Ensure a 24/7 knowledgeable and custom-oriented help desk with minimal waiting times
  9. Send out a quarterly newsletter to all participating clinicians to keep them up-to-date with PCEHR and NEHTA developments
  10. Cherish the clinical steering committee, make sure it’s involved at all times, and ask for lots and lots of feedback from clinicians!

What’s on your wish list? Leave a comment below and I’ll send it to the steering committee.