The digital healthcare revolution is well underway, promising to streamline patient information-sharing and transform the experience of care. Yet, as technology races ahead, there’s a real risk that healthcare consumers–the very people these systems are built to serve–might be sidelined. At the 2024 Wild Health Summit, industry leaders gathered to explore the future of digital healthcare, but for consumer advocate Hamish Russell, one big question remained: where is the consumer voice in this new digital landscape?
Connected care: from here to modernity
The 2024 Wild Health Summit on Tuesday 22nd October was an opportunity for healthcare leaders from around Australia to come together and discuss the future of digital healthcare. Wild Health kindly offered Health Consumers Centre some complimentary tickets to encourage consumers to participate in the day. Aptly titled ‘Connected care: from here to modernity’, the Summit showcased technology and healthcare experts who are forging the path towards digital information-sharing. Acknowledging the coordinated effort from government, healthcare, and tech providers to meet an increasing demand for one-stop patient information-sharing, the Summit aimed to put ‘the key people in the one room’ to discuss the challenges, benefits, and future of digital healthcare.
One of the people in that room was Hamish Russell. Hamish collaborated with Health Issues Centre in early 2024 on the development of the Privacy Management Framework for Victoria’s new CareSync Exchange, a secure patient health information sharing system across public health services.
A self-confessed technology-in-healthcare novice, Hamish was excited to access one of the complimentary tickets. He wanted to get a better understanding of what’s coming down the pipeline, how other consumers feel about it, and hear what’s being done to address concerns about privacy and ownership of personal information in a digital world. While Hamish absorbed many important insights over the day, he was left questioning what the people in power were doing to ensure the consumer voice was not missed amongst the flurry of innovation.
We met with Hamish after the event to hear about his experience and then collaborated to share his learnings via this article. Here are some of his key insights from the day:
Language matters
Hamish shared that at the Summit, ‘consumer’ was used to mean the hospital clinicians, GPs, and other healthcare providers responsible for implementing the technology that shares patient information. This is very different to our definition of the term ‘consumer’.
What Hamish couldn’t help but notice was that the ‘end user’ – the healthcare consumers themselves, were ignored in conversation almost entirely.
“I was struck by the way that clinicians were situated as the ultimate consumer; how they can connect quicker, more seamlessly, more productively,” said Hamish.
Because the end users in this context were seen as the GPs and other health professionals, the focus was on their needs and barriers to adoption. Healthcare users were not acknowledged as a key stakeholder that had a role to play in developing the technology that will directly impact them and their care experiences. “There were a lot of assumptions being made about end user engagement, but very little being shared about how consumers may have been involved in creating the programs that will house our information”.
Being in a space that defined a healthcare ‘consumer’ so differently had Hamish recognising how disruptive and important his presence at the Summit was. “I realised that there were many things I would need to take away from the discussions to help myself and other consumer advocates understand and work within the digital healthcare space”.
Ownership matters
A key question that arose for Hamish throughout the day (the “elephant in the room” as far as he was concerned) was around who ‘owns’ patient information in a digital healthcare landscape.
In Hamish’s view, “Data about me is mine, it’s not yours. You might have collected it but it’s still my information. If you use it for something other than you said it would be for, you’ve invaded my privacy.”
A particular comment resonated in Hamish’s mind post event; “I found myself talking to a health professional who suggested that if a person is sick enough, they really won’t mind what information is shared, and with whom”.
Hamish urged, “People are concerned about their privacy. If they talk to their GP who they are comfortable with, they don’t necessarily want that information available to every other healthcare provider in the state.”
There is a genuine fear that healthcare consumers are being spoken for (or over) when expressing concerns about their privacy. Hamish felt that questions about information ownership and how personal data will be shared were being placed in the ‘too hard’ basket, because they were slowing the roll out of digital healthcare systems.
Inclusion matters
Hamish noticed that prioritising digital system rollouts over genuine consumer engagement ignores the ongoing stigma many healthcare users still face. This lack of control over who sees their information can make that stigma even worse.
Through Hamish’s involvement in the development of the Privacy Management Framework for CareSync Exchange, he gained a deep appreciation for how bias and discrimination play out for some consumer groups in healthcare. “There is still a lot of stigma surrounding some health experiences, particularly mental health experiences, so what does it say to consumers who are going through this that they don’t get to decide on how their story is shared?”.
“There will be challenges with uptake of digital information-sharing if a diverse community of consumers have not been consulted on how it should roll out.”
As one of only two consumers at the event, Hamish had hoped to take the opportunity to elevate the consumer perspective. “I felt like I wanted to yell out when an assumption was being made, to try and shift the perspective from the person inputting the data, to the people that the data is about”. But ironically, the technology got in the way on the day. “You couldn’t put your hand up to ask questions; we had to submit questions via an app. I found that challenging and disconcerting, while the professionals in the room were perfectly comfortable with it.”
Access matters
Hamish may have been one of only two consumers at the Summit but having access to the conversations that were taking place was incredibly valuable. “It would have been challenging for me to get a foot into this space without being connected through the Health Consumers Centre. I got frustrated at times, even lonely at times, but I certainly valued the information that was shared at the Summit”.
Hamish felt it has spurred him on and enhanced his capacity as a consumer advocate,
“It has brought me up to speed with just how much is happening within the digital healthcare space, and the volume of interest from healthcare providers and tech vendors in Australia and around the world. I now know I have things I need to get on top of and have information to share with other people like me”.
What if more consumers were actively involved in spaces traditionally taken up by industry leaders and power holders? Hamish’s experience at the Summit shows that consumers need a seat at the table. When included in the process, they can be powerful advocates and allies in driving meaningful, responsible change in digital healthcare.
Different perspectives matter
There was a sense that the Summit was an echo chamber, in which the speakers were preaching to the converted. With Commonwealth and other government department representation from most Australian states and territories, it was evident to Hamish that the government has made a big commitment to move forward with enhancing healthcare information systems like MyHealth Record, and they’re looking to do this in a hurry.
“I was not aware that the government was moving towards a standardised use of MyHealth Record, and I’m not sure it’s something that consumers are widely aware of,” said Hamish.
“It did feel a little bit like it was the MyHealth Record way or the highway, so I am glad I had the opportunity to hear a bit about it, otherwise I may have been quite surprised later down the track”.
The desire to nationalise, standardise, and transition the use of MyHealth Record from a ‘sometimes’ system to an ‘all the time’ system was met with keen interest from technology vendors. They highlighted how the systems can already achieve what healthcare providers want in a digitally connected world, so it’s now just a matter of ‘socialising’ it. Hamish felt it was less a discussion about what we might want from these digital systems and more a pitch for what is already in the pipeline.
Hamish reported that important issues such as the patient’s right to review records relating to them, to correct mistakes in their records, or address issues surrounding what records they wish to keep as more confidential were not considered as a part of this Summit.
Pace matters
Technological enhancements to our healthcare system may be moving at such a rate that there is a risk of some communities being left behind. Hamish found he was confused by the use of tech language and acronyms from digital healthcare advancements in the USA, having to search for definitions himself to keep up with conversations at the Summit. There is a risk that assuming the audience’s knowledge and moving too fast will generate consumer disengagement. Will valuable digital enhancements be received with resistance because the consumer is being asked to move too quickly without being taken along the journey?
There was also concern from GPs about how they would find time to catch up with the new technologies they’ll be required to use. Hamish learnt that many GPs felt that their current software was so out of date that they may be unable to integrate with more advanced information-sharing systems. This would result in significant (and unpaid) time commitments to overhaul their current systems. Like Hamish’s sense that the consumer concerns were being bulldozed in the interest of progress, GPs were left with a sense that they just have to find the time and resources (without the incentivisation to do so), to keep up with the changes that are coming no matter what.
Authentic engagement matters
At Health Consumers Centre, we wholeheartedly believe that consumers and community members need to be treated as active partners in health system transformation. Speaking with Hamish about his experience further highlights the work that needs to happen for this belief to be adopted across different industries or subsections of the health system.
We are very proud of the role that Health Issues Centre* and Victorian consumers played in the development of the Privacy Management Framework for CareSync Exchange. Incorporating the consumer perspective was set out as a clear priority by the Victorian Department of Health within the development process. This is an example where consumers were brought in early in the process and have been able to shape policy that will impact consumers and health practitioners statewide. The Framework is publicly available on the Victorian Department of Health’s website.
Pockets of great work are happening. There are examples of consumers and community members being meaningfully involved as partners in research, service design, evaluation, governance, conferences, and information sharing. We are on a mission to make this the norm, not the exception.
If you would like to work with us in shifting the dial on meaningful consumer and community engagement, please reach out to us at healthconsumers@deakin.edu.au.
* Health Issues Centre was the Victorian health consumer peak until its closure in early 2024. The Health Consumers Centre at the Institute for Health Transformation at Deakin University is the custodian of its legacy.
