It was a national first when established in South Australia in 2017, a unique database that would allow researchers for the first time, to track how older Australians have navigated the aged care and healthcare systems and how the care they received has affected their health and wellbeing. 

In the past 18 months, the Registry of Senior Australians (ROSA), has really come into its own – providing critical information and research to the landmark Royal Commission into Aged Care Quality and Safety, and invaluable tools to enable national assessment of the health and wellbeing of Australians who are receiving aged care services, and the quality of the services they receive.

A flagship program of Health Translation SA, ROSA’s efficient model is leveraging existing information by bringing together diverse datasets collected by different organisations across the nation to provide a complete picture of the ageing pathway.

The ROSA research team, based at the South Australian Health and Medical Research Institute (SAHMRI), supported by Health Translation SA and the South Australian government through the Department of Innovation and Skills, recently led four reports for the Royal Commission and contributed to a further four looking into areas such as the cost of quality care and hospitalisation rates of people in aged care.

Working with a deidentified ROSA dataset of 3.5 million older Australians, the SAHMRI research team examined a wide range of areas that are important to ensuring high quality, coordinated, efficient and age-friendly services and practices are available for older Australians.

Using a range of existing data sources across the health and aged care sectors, including ACAT assessments, hospitalisation records, and use of medications, the team has developed a 12-indicator Registry of Senior Australians Outcome Monitoring System, which is a data-based tool that provides quality and safety indicators for residential aged care, similar in concept to league tables, allowing comparisons to be made between different aged care providers to help drive quality improvement initiatives.

The tool has been embraced by the Royal Commission and the aged care sector, because not only has it been developed in close consultation with aged care providers, clinicians, consumers, and a range of peak bodies, it is for the first time providing powerful, evidence-based knowledge on how the sector is performing across Australia and how it can improve care provision for older people.

Associate Director at ROSA, SAHMRI and University of South Australia Adjunct Associate Professor Gillian Caughey says consultation with consumers, clinicians, aged care providers and peak bodies has been invaluable in guiding meaningful research.

“At the end of the day the work we do impacts some of the most vulnerable people in our community and having a reference group of community members with experience of the aged care sector and caring for older family members navigating the aged care system, keeps their needs front and centre,” Assoc Prof Caughey says.

“The Royal Commission exposed serious shortcomings in how we care for older Australians, not only physically, but at the deepest level as human beings; how we deliver care that ensures their physical and mental well-being, but also their dignity and sense of personhood.

“Through the consultation and engagement strategies ROSA has established, and with high level data analytics using the ROSA national data platform, we are able to provide evidence-based research results to the sector, which is a powerful tool for them, as they work with governments to redress failings in the aged-care system.”

The consultative and advisory relationships ROSA has established are integrated across all aspects of their research.

ROSA Project Manager and Consumer Engagement Officer, Dr Sarah Bray, is a linchpin for the team, establishing effective and productive partnerships between the researchers, clinicians, consumer, and industry representatives across all aspects of ROSA research, from developing proposals for new research projects to communicating the research findings effectively to different audiences.

“We have made consultation with community members, advocacy organisations for older Australians such as the Council on the Ageing (COTA SA), clinicians and aged care industry providers and peak bodies, such as Leading Aged Services Australia (LASA), central to our operations,” Dr Bray says.

“And importantly, members of our reference groups, including community members, partner with us, working side by side with the researchers to shed light on issues that have relevance in the real world, and help us to communicate our research findings so they can improve choices and outcomes for people using aged care services.”

That representation runs across ROSA’s entire governance structure – its overarching steering committee and across its research, executive, and consumer and community committees.

Dr Bray says this kind of embedded engagement with consumers and industry groups, gives the research a meaningful compass and a focus on how its translation can transform policy and practice.

“In everything we do, from something as simple as advising us on the language used in public-facing information like press releases, to developing our quality and safety indicators for aged care, the engagement of our reference and community groups improves and refines our research and adds to its relevance and capacity to drive innovation,” Dr Bray says.

Health Translation SA has provided strategic advice regarding research translation and facilitated key networking opportunities for ROSA, as well as providing support and forums for consumer engagement activities.

The “Connecting with Community” events held at the SAHMRI auditorium bringing researchers and the community together to share stories of successful consumer engagement in research and two Data Research Fellows from Health Translation SA who have recently commenced a collaborative research project with ROSA and the Commission on Excellence and Innovation in Health Palliative Care Clinical Network to better understand palliative care services provided to older South Australians, are just two examples of this support.

ROSA was established in 2017 by the Healthy Ageing Research Consortium (HARC), a cross-sectoral partnership of researchers, clinicians, aged care providers and consumer advocacy groups. The Consortium is coordinated through the SA Academic Health Science and Translation Centre (Health Translation SA), supported by the SA Department for Innovation and Skills through the Premier’s Research and Industry Fund, and is a collaboration between 13 organisations: the South Australian Health and Medical Research Institute (SAHMRI), SA’s three universities (University of Adelaide, University of South Australia, and Flinders University), five industry partners (Helping Hand, Silver Chain, ECH, Adelaide PHN, Country SA PHN), two consumer health advocacy groups (COTA SA, HCA SA), SA NT DataLink, and SA Health. ROSA would like to acknowledge the Australian Institute of Health and Welfare (AIHW) for the linkage and construction of the input data, SA Health, NSW Ministry of Health, VIC Department of Health and Human Services (DHHS) and QLD Health for the provision of the state-based data used in the ROSA with linkage via the AIHW, Centre for Health Record Linkage (CHeReL), the Centre for Victorian Data Linkage (CVDL), SA NT DataLink and Queensland Health’s Statistical Services Branch. ROSA would also like to acknowledge all the ROSA participants and the South Australian Aged Care Assessment Teams (ACAT) for their role in facilitating the enrolment of participants.