Interoperability is the number one need for consumers--that was a bold claim from a consumer panel facilitated by Pip Brennan at the Council for Connected Care in Sydney last week with Ricki Spencer, Shu Chen, Deidre Ellem, and Mehmet Kavlakoglu. The Australian Digital Health Agency and Department of Health and Aged Care know that, which is why they have contracted HL7 Australia and CSIRO to launch a national FHIR accelerator called Sparked . Brett Sutton was one of the speakers at a Sparked launch for clinicians and industry.
I took away a few additional insights from the consumer panel, which addressed the limited consumer voice in healthcare.
Health is not an endpoint
In the healthcare industry, we often assume health is the ultimate goal. The welcome to country by a Uncle Michael West pointed out that health is only one element of a high quality life--spirituality and community are also important. A panel member emphasized this point through the example of needing to have stable housing in place before one can turn attention to health. This point is relevant when making policy decisions, for example, that weigh the importance of transmission of a virus against being able to have a relative with you when you die or going to school.
The view outside my hotel room
Telehealth is more than convenient--it can be a lifesaver
For people who have to travel hundreds of kilometres to get health care or for the panel member who often gets harassed in public, being able to access healthcare from home can be a lifesaver. Healthcare providers often underestimate the need for telehealth.
Unique challenges exist for culturally and linguistically diverse consumers
A panel member originally from China pointed out that even after being in Australia for 18 years, she doesn’t always understand or isn’t able to communicate healthcare information effectively. Managing medication information is especially challenging, and she wished My Health Record was more effective in helping patients. She suggested that we leverage churches and communities more to build trust and share knowledge.
Consent should not be binary
Since coming to Australia, I have heard a lot of opposition by consumers to their healthcare providers having access to all of their data. I wonder if it’s complicated by the fact that healthcare is largely delivered by the government--one man referred to his surgeon as “big brother” when explaining why he didn’t want him to see the data from his GP visits. A panel member representing people with mental health issues brought this home in talking about consent. He was shocked to discover after consenting to medical tests that a different healthcare provider had access to those results. He felt deflated and pointed out that the binary option we are often presented--consent to service or don’t get the care--is not nuanced enough while balancing the need for choice with the technical requirements for supporting dynamic consent.
Connected care offers a solution to the isolation of consumers and carers
The pandemic helped society better understand the effects of isolation, which is the everyday experience for carers. The vision of digitally enabled connected care offers a future with an electronic village to help carers find services, information, and assistance and connect with others. We are privileged to be part of a team who built and is evaluating a digital platform for people affected by brain cancer called Brain Tumours Online. One of the most exciting PhD projects at the University of Utah was by Pallavi Ranade-Kharkar who developed a tool to facilitate care coordination in complex pediatric patients. Navigating Health is an initiative led by the passionate and powerful Siân Slade based on the fact that “we talk about patient-centred care but we do not have patient-centred systems”. Instead, patients are left trying to navigate a fragmented and confusing system.
I have been teaching informatics and digital health to all kinds of learners for two decades, and the module on interoperability has always been the most difficult--how do you convey the importance of the plumbing behind the technology? Now consumers are teaching me why it's important, and the Australian government is heavily investing in it. Looking forward to working with consumers/carers and clinicians to design the new models of care that will necessarily arise in a more interoperable system.
Σχόλια