Follow up to Senate Submission + Future Health Index

Sep 22, 2018

My last blog entry published my senate submission (which is formally found here) and testimony about the Australian My Health Record.

I’ve had a lot of feedback about my submission from across the healthcare eco-system. Almost all of the feedback has been positive - endorsing my basic argument, and expressing the hope that the senate and/or the department take note of my submission and broaden the scope of the My Health Record to allow for a federated architecture.

Not every one agrees, but no one has said so publicly or privately: the My Health Record remains divisive and political. We just aren’t having good quality discussions about how it should work in public. If the Senate inquiry has demonstrated anything to me, that’s the lesson: we aren’t having the right public discussion about what we have and what we should have.

On the subject of the Senate, many people thought that I was wasting my time here - the senators would not understand what I was talking about. But I thought the sharp and insightful questions from Senators Siewart, Keneally, Di Natale and Gichuhi indicated that they understood my point quite well (even if I didn’t always understand the questions correctly until too late). However given the variation in the testimony, and the wider political context… I have no idea what the inquiry report will contain.

Of course, the agency and the department may choose to proiritise a federated architecture as part of the re-platforming anyway, irrespective of the Senate report; that’s possible but it will take some time before any decision might be made. So we’ll have to wait and see.

This week, the 2018 Future Health Index was published. This has some relevance to the My Health Record. Consider this, from the press release:

Our Future Health Index research shows that ‘universal’ electronic health records (EHRs) and AI will play an important role in advancing integration and promoting more effective use of data. These technologies are investigated in detail in the report, with five key learnings emerging that provide guidance on the steps to drive integrated care:

  1. Get regulation right. Clearly defined polices and robust data privacy and security standards at the national level build confidence in all parts of the healthcare continuum and help healthcare institutions develop their own data codes of practice, as well as encouraging healthcare professionals and the general population to collect, share and analyze data with greater confidence.
  2. Modernize education. Healthcare professionals won’t demand EHRs and AI tools at work if they don’t learn to rely on them during medical training. Increasing healthcare professionals’ adoption of these tools must start with their integration into medical school curriculums.
  3. End top-down implementation. Healthcare professionals are unlikely to adopt new tools when they’re presented as a ‘fait accompli’ by technologists. Creating EHRs and AI solutions in collaboration with both healthcare professionals and the general population will have a significant impact on successful integration.
  4. Prove and explain value. Both healthcare professionals and patients need to be able to easily understand how data collection and analytics tools make a difference. Constantly measuring and communicating outcomes will create a body of evidence that will help bridge the understanding gap.
  5. Harmonize data standards. Companies, healthcare professionals and governments in each market must work together to reach a greater degree of consensus on data formats and protocols.

The bolding is mine - I’ve highlighted the points in the summary that pertain to testimony about the MyHR to the Senate - for example, we cannot at this time say that we have “robust privacy and security standards that build confidence” nor can we say that “health care professionals and patients easily understand how the MyHR will make a difference”.  And of course, “Companies, healthcare professionals and governments should work together on data formats and protocols” - we have an international process for that, but right now, nothing in Australia, to my despair. 

On the other hand: “End top-down implementation” is very easy to say, but really hard to actually do. Much of what we have in the MyHR was an outcome of clinician led design, or at least the intent to have that. As is every other EHR type software product I’ve worked on. But reality is way messier than any design process can deal with, and national health records must be some of the messiest products ever. Armchair critics and bloggers should keep that in mind…. as well as anyone who works on any federated architecture for a possible phase 2 of the MyHR (might be me)

p.s. I was interviewed for the Future Health Index report.