MyHealth Record: real conversations in the classroom

Media controversy has haunted the Australian Digital Health Authority, and it seems my social media feed have been as eager as I to explore the realities of what MyHealth Record means for us.

So when my colleague Nicole – a.k.a. Dr Nicole Vincent, or @drcolekat on twitter, this insanely smart philosopher come ethicist come neuroscience and law scholar, who gets goosebumps whenever she gets passionate about futures and the ethics of emerging technologies – said she was on the prowl for an industry partner to explore the intersection of data and health with her Impossibilities to Possibilities students, MyHealth Record was an obvious choice. An important future-focused Government initiative, a current and exciting topic given the endless media coverage, and a clear opportunity to play a part in something of great social impact.

MyHealth Record was also an obvious choice for another reason — namely, the subject’s explicit focus on teaching students how to turn apparent impossibilities into possibilities. The opportunities to improve (and save) people’s lives, to cut health-care costs, to enable people to better manage their own conditions, to prevent the onset of disease – and, in general, to improve Australians’ health while cutting the costs of health care – are simply immense. These are but a few of the possibilities of the MyHealth Record system. Yet, concerns about privacy, about how this data and the system will be used in the future, who will have access to it, about the default-opt-in-unless-you-opt-out strategy, and the short time frame that the public was given to opt-out should they choose to do so, had fuelled a media debate that has threatened to derail things and turn these possibilities into impossibilities.

Alas, these features are also what made the prospect of enticing the MyHealth Record team to find the time to work with our students into a highly ambitious ask. Given just how busy the folks at MyHealth Record would be dealing with the deluge of media inquiries, I didn’t like my chances of getting a positive response. Furthermore, one of the most challenging aspects of my job is navigating the maze of automated switchboards – first, to find an actual human, and then to find the right human – which takes time, but yet our lead time was very tight. Still, the opportunity for our students to work with a leading industry partner in this field and help them identify potential hurdles (impossibilities), and to identify ways to address them (possibilities) was too enticing, and so we decided to give it a shot. And, spoiler alert, it turned out that the lovely MyHealth Record people were keen a mustard!

Having followed much of the debate about MyHealth Record unfold in the legacy media, I was eager to hear what our students’ views were on the matter. And yet, one of the biggest surprises was that for almost half of the students, this was actually the first time they had even heard of MyHealth Record! Our students found this equally puzzling, and so students became one of the stakeholder groups that the class investigated. How is it that a highly connected generation of university students could have overlooked such an important social issue? And why, when told about it, so many felt compelled not share their health data with the government, when they are perfectly happy to share so much of their lives on social media? Making MyHealth Record into something more like a social media platform was one of the speculative proposals that they came up with.

The other four groups in Nicole’s class focused on issues that affected dual citizens and others who frequently travel abroad (e.g. how to get prescriptions filled while in another country), employees (e.g. how to avoid MyHealth Record being misused by unscrupulous potential employers in job interviews who ask for a peek into the potential employee’s medical history), migrants (e.g. how to import the health records of people who settle in Australia, and respect the fact that their conception of what constitutes health may differ from our own), and prescription drug addicted individuals (e.g. how to ensure that the MyHealth Record system will enables this population to maintain good relations with their GPs, rather than opting out for fear that they will be denied access to medications, which would only isolate them even further with adverse effects on their health). Over the two weeks of working on this project, Nicole taught the students how to work effectively in multi-disciplinary groups that used a range of innovation tools from across the disciplines and professions to turn truly difficult problems into opportunities that would create a win-win-situation for all.

By the end of the subject, the students had not only thoroughly explored their identified stakeholders and areas, but also created polished proposals which they presented to the MyHealth Record team. And it was extremely rewarding to hear James Wilson from the Australian Digital Health Agency comment that the conclusions our students reached and the terrain they had covered had taken the people within their agencies years to grapple with. Quite impressive, right? Especially when you recall that only a fortnight earlier less than half of the students had not even heard of MyHealth Record!

For me, this subject showcased how effective the industry collaborations can be within our faculty. It gave our students an opportunity to engage with a current and real issue, a discussion our society is having almost daily, and it perfectly highlighted how our students are encouraged to develop their thinking and creativity.

In all, I’m looking forward to seeing how our faculty continues to engage with agencies like the Digital Health agency, and my intuition tells me this is the start of a beautiful friendship! A big thanks to James Wilson and his colleagues for their time!