What will it take to end rheumatic heart disease in Australia?
After two days of meetings to discuss strategies on eliminating rheumatic heart disease in Australia, the take home message was clear. Ending rheumatic heart disease (RHD) in Australia will require a coordinated strategy that includes focusing on collaborative community based approaches to:
- Train and resource more Aboriginal Liaison Officers, Health Practioners and Health Workers, and Community Development Officers in community.
- Implement a two ways learning model that can facilitate greater community engagement and trust while creating culturally safe services.
- Focus on developing relationships between services and families, patients and communities, within communities and between RHD Control programs and services.
- Adopt a case management approach with flexible care options based on community and patient preferences.
- Utilise models and tools with the ability to provide Indigenous people with a culturally competent service addressing known service gaps. Models and tools available: Managing Two Worlds Together, CATSINaM culturally safety frameworks, Housing for Health, and Palliative Care Australia’s ‘Dying to Talk Discussion Starter’
These types of collaborative and community based approaches will be needed at every stage of prevention, along with robust, respectful relationships with community, if RHD is to be eliminated in Australia.
RHD experts, doctors, nurses, health workers and community members met in Darwin on the 10th and 11th May to discuss and debate strategies to end rheumatic and make recommendations for people working at the coal face and for policy makers.
The first day was an opportunity to give feedback to stakeholders on the outcomes of the Northern Territory Secondary Prophylaxis (SP) Study (NHMRC funded research looking at the effect of various interventions on SP adherence rates) and formulate recommendations based on the study and on new initiatives and tools.
The second day of meetings saw the END RHD Centre for Research Excellence (CRE) hold its annual meeting to step out a strategy to wipe out rheumatic heart disease. Now in its 3rd year, the CRE is tasked with identifying costed, stepwise, evidence-based interventions to be presented to the Australian Government as part of the National Endgame Strategy.
Key to the strategy will be incorporating the collaborative approaches highlighted above with a national RHD advocacy group, the END RHD Coalition. The newly formed coalition, currently consisting of six leading health organisations (Menzies School of Health Research, Australian Medical Association, Australian Heart Foundation, National Aboriginal Community Controlled Health Organisation, Aboriginal Medical Services Alliance Northern Territory and the END RHD CRE) has identified the need to grow organisational membership and develop a workable governance structure that facilitates a cohesive and supported advocacy approach.
Recognising that the National Endgame Strategy will require expertise and collaboration, the meetings, convened by the Telethon Kids Institute and Menzies School of Health Research, drew a wide variety of engaged stakeholders. Sessions were led by doctors, nurses, researchers, Aboriginal health workers, and community members.
Professor Jonathan Carapetis, Chief Investigator with the END RHD CRE and Director of the Telethon Kids Institute said,
"One in 43 Indigenous people living in remote and rural areas have rheumatic heart disease. This country has the largest disparity in cardiovascular disease outcomes between its Indigenous and non-Indigenous populations in the world and it is simply unacceptable.”
Ms Heather D'Antoine, Associate Director for Aboriginal Programs at Menzies School of Health Research and a chief investigator on the CRE said the END RHD CRE meeting was a valuable opportunity to discuss life-saving initiatives that can’t come soon enough.
“There are currently over 2600 cases of rheumatic heart disease in the Northern Territory, and young Indigenous Australians in the Territory are up to 122 times more likely to have rheumatic heart disease than their non-Indigenous counterparts.
“The impact on our community is devastating; children must travel for heart surgery; young adults live with premature disability; and pregnant women face high-risk pregnancies.
“To prevent further infections, people being treated for rheumatic heart disease must endure a painful penicillin injection every 28 days for a minimum of ten years (known as secondary prophylaxis) and, on average, young people aged 15 – 24 only adhere to 50 per cent of their required injections, leaving them at serious risk of chronic heart damage,” said Ms D'Antoine.
Secondary prophylaxis is a crucial step in preventing RHD. Its role in the ‘Endgame’ strategy was discussed in detail over the two days. Jeff Cook, Clinic Manager and nurse in the Laynhapuy Homelands of East Arnhem for the past 12 years, presented one session. When asked about the changes Jeff has seen over the last 12 years and where improvements can be made he had this to say.
The CRE will deliver the National Endgame Strategy in 2021. RHDAustralia, as the translational research partner of the CRE, uses research findings from the SP Study and CRE research projects to support health workers and Indigenous communities by bridging the gap between evidence based research and its use and implementation by health services.
For more information about the END RHD CRE or to view the prospectus, visit www.rhdaustralia.org.au/end-rhd-cre