Harry Iles-Mann has had two liver transplants and has a good idea of the complexities of the health system and how to work around them. We should talk with people like him more often.
The healthcare sector needs to move the delivery of care further upstream and provide “true, community-based care”, said patient advocate Harry Iles-Mann at Wild Health Summit Sydney.
In a panel discussing the variety of virtual front doors now available to patients, Mr Iles-Mann encouraged the audience “to step back further in the food chain” that causes someone to access higher levels of care.
“What’s needed is a support structure that will stop people from deteriorating to the point where they require virtual, interdisciplinary management of their conditions,” he said.
Mr Iles-Mann said healthcare providers have started virtual hospitals, then stepped back and created virtual emergency departments, “and now they’ve started asking how to stop people from getting to virtual emergency departments”. He said that when devising the future of healthcare in Australia “it would be wise to avoid a hurricane of virtual front doors”.
“The question that we really need to be asking, and putting emphasis on, is ‘how do we stop people actually getting to the point where they need to be triaged and engaged with a directory of services?’” he said.
Mr Iles-Mann said what was needed was “true, community-based care” but acknowledged the political imperatives that prioritise provision of hospital services.
He warned, however, that healthcare roadmaps can’t be retrofitted for preventive health and that course corrections are very hard to do in reverse.
“We know that being even one or two degrees off at the starting line means you cross the finish line in a different race,” he said.
“If our only response is to work back sequentially in reverse, we’re going to get to a point where we realise that in a community care context, there are decisions that we now can’t make.
“There are [limitations] we’ve already locked ourselves into because we’ve built from the finish line back, rather than asking, ‘this is where we all start, what’s the most appropriate pathway to delineate different approaches from here?’”
Mr Iles-Mann said that there were aspects of the healthcare system that were needlessly complex.
“A lot of the complexity we face is of our own making,” he said.
“A lot of the complexity has been created because the consumers — the people that have to actually follow those pathways – have not been involved in any way, shape or form in carving out those pathways.
“The first sensible, obvious and critical step is really stepping up both the maturity, and a sense of purposefulness, in engaging with consumers in the community, to actually start defining and clarifying some of this complexity.
“You see it in a really big systemwide set of examples, but even on a personal scale, just in the management of my own care,” he said.
Mr Iles-Mann said there were some parts of his care that appeared “so complicated and administratively bureaucratic” but for which he figured out efficient workarounds.
“Sure, I had to get my head around a few data points and bits of knowledge and learn from extra sources but ultimately I’ve done all that. I’ve managed to clarify information cohesively and find effective [pathways],” he said.
However, Mr Iles-Mann said the healthcare system was missing out on those solutions.
“The sector as a whole doesn’t benefit from any of that insight because it doesn’t fully engage with patients.
“Consumers and community…are not just a qualitative data point. We are quantitative in that we ourselves are a wealth of verifiable codified data points that we could be implementing into [the system].
“But we haven’t yet taken that extra step … to seek to distil the consumers’ learnings or bring those learnings back into the system.”
Mr Iles-Mann pointed to other countries as precedents for how Australia might solve healthcare complexities by collaborating better with consumers.
“Estonia is a perfect example. You have a population that is driving the expectation and the benchmarking for what they want from their health services and health sector as a whole.
“We’re not there yet as a nation … but the key to getting to that point is partnership and meaningful relationships and dialogues,” he said.
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