A new heart health tool is supporting conversations between Aboriginal and Torres Strait Islander people and health professionals.
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Sitting across from David Follent, the ticking is impossible to ignore. With an Apple Watch around his wrist, the sound isn’t coming from there.
Before long, I realise the sound is coming from his heart, where two mechanical valves are hard at work, helping his heart pump blood around his body, quite literally keeping him alive.
Asked whether the ticking is ever annoying — does it keep him up at night — Follent instead says it’s comforting: if it’s ticking, it’s working.
Indeed, when the valves stopped ticking in 2020, about a month after he’d had them installed, Follent knew he was in trouble.
“I had a cardiac tamponade,” he says. Extra fluid had built up in the space around the heart, putting pressure on the heart and keeping it from filling properly. The results can be fatal.
“I collapsed at the front of my home, went back to hospital and had a cardiogenic shock. I’m acutely aware that if that had happened outside of a major city, I wouldn’t be here talking to you, that’s how serious all of that was.”
Follent’s journey, from spending zero time in hospitals as a patient to spending more than two-and-a-half months there, changed his mindset on how to consider what a health journey should mean for someone.
A leading expert in shared decision-making and senior project officer within the NSW Agency of Clinical Innovation, Follent was at The Australian National University (ANU) for the launch of the Heart Health Yarning Tool.
Speaking at the launch, Follent — a proud Bunjalung man — likened his time in that hospital bed as his ‘Road to Damascus’ moment.
“Reflecting on a situation I lived through, and being able to go from being resistant to playing in this space to jumping in head-first, I understand the importance now.
“The more I read, the more I knew I had to do something.”
The Heart Health Yarning Tool is a shared decision-making tool designed to support conversations between Aboriginal and Torres Strait Islander people and their health professionals about cardiovascular risk.
Developed by teams at the ANU and University of Sydney through funding from the federal Department of Health and Aged Care, the tool aims to facilitate shared decision making about heart disease prevention in ways that support the health and wellbeing of Aboriginal and Torres Strait Islander communities.
The design is based on a shared decision-making model that was developed by the New South Wales Agency for Clinical Innovation with Aboriginal communities across New South Wales, called Finding Your Way.
Dr Rosemary Wyber, a GP and Research Fellow at ANU, led the research team at the National Centre for Epidemiology and Population Health.
In 2020, the federal government commissioned the ANU to look at policy and practice options for improving chronic disease care for Aboriginal and Torres Strait Islander people.
Wyber says one of the key findings during those early conversations was the need to consider the new cardiovascular risk assessment guidelines, and how ethnicity was considered as part of that clinical guideline development.
From this, a partnership with the University of Sydney was developed to look at ways of engaging people in shared decision making to reduce cardiovascular risk.
“The really exciting thing about the tool is it provides a framework for clinicians to have culturally safe conversations about reducing cardiovascular risk — we know those conversations are often rushed or reductionist and led by the clinical agenda,” Wyber says.
“In reality, when we have the opportunity to hear about patient priorities and patient perspectives, we’re much more likely to make meaningful decisions about lifestyle changes or initiating medications.
“This tool gives clinicians a way to do that safely, which can be led by the consumer, and provides a way to reflect on their priorities throughout the consult, and have it be a less didactic consultation, and that’s really a game changer.”
“This is really a mechanism to bring patients back into the discussion. ”
David Follent
Carissa Bonner is Deputy Director of the Sydney Health Literacy Lab at the University of Sydney. She has been working on shared decision-making tools for more than a decade and was approached by the ANU team to lead that component of the project.
“When we were approached to do this we didn’t know what we were going to come up with, it wasn’t a very planned out process,” Bonner says.
“We went to communities first, as well as stakeholders. The ultimate goal is closing those gaps in health outcomes. So if we can use tools like this to help Aboriginal and Torres Strait Islanders feel safer then they will be more inclined to get those heart checks.”
For Follent, the tool puts the patient in the middle again — a key aspect of shared decision-making.
“These anecdotal stories you hear where doctors just focus on one solution, which might be appropriate too, but they’re not unpacking that a little bit more and asking what really might be going on,” he says.
“When you’re in hospital and in such a vulnerable situation … there is this element of not being able to – in your own mind – run lines of questions like ‘what’s going on, what are my options here, how, why, everything’.
“My observation was there were doctors and nurses who were fantastic and all over it, but there were others who weren’t quite equipped for those questions.
“We hear a lot about patient-centred care, but the patient is actually left out of the conversation, so this is really a mechanism to bring patients back into the discussion.
“I’ve got a firm belief that when you help lift the people who are amongst the most disenfranchised in society, that floor rises for everybody.”
This article first appeared at ANU College of Health and Medicine
Top image: David Follent. Photo: Tracey Nearmy/ANU
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