South Australia’s capacity to become a national leader in registry science has been backed by $700,000 funding to the SAHMRI Registry Centre from the Australian Government Department of Health and Aged Care.

The Centre’s Strategic Director Cindy Turner says the funding under the National Clinical Quality Registry Program will support several projects with a central focus on promoting best practice and communicating health outcomes to the public.

“Australia’s registry science sector is still developing, but registries are making really important findings that can very quickly lead to improved care, better decision making and better outcomes in the real world,” Ms Turner said.

“One problem we can encounter in registry science however is ensuring these findings are clearly communicated to the public so that treating clinicians and people receiving care can put what we’ve learned into practice. Thanks to this funding we will work with registries to help them develop a broad range of communication tools to be used across multiple platforms.”

Registries typically target a specific medical condition or procedure, but whatever the focus, data from individuals is collated and analysed to identify large-scale trends that can inform better health care decision making.

Ms Turner says that, while the science itself can be complicated and highly specialised, the way it can benefit real people in real time is simple.

“Let me give you an example,” she said.

“ROSA – our Registry of Senior Australians – analyses data from thousands of Australians who enter an aged care facility over a given period. This analysis identified a strong association between new residents who received a detailed review of their medications upon entry to an aged care facility and a lower risk of death, compared to people who did not have their medicines reviewed by a pharmacist.

“If the families of people entering an aged care facility are informed about the evidence, they will be more likely to ask for a medication review for their loved one, knowing that it is likely to have a real benefit.”

The Consumer Friendly Information (CoFI) project directly involves three SAHMRI Registry Centre members – ROSA, the Transcatheter Aortic Valve Implantation Registry (TAVI) and the Australian Corneal Graft Registry.

Alongside the CoFI project, the Centre has been funded to undertake a series of initiatives to help the Federal Government deliver on its National Clinical Quality Registry and Virtual Registry Strategy.

“As a centre of excellence in registry science, we have been entrusted to help develop the sector across the nation,” Ms Turner said.

“We’ll do that in a number of ways including providing guidance and support to newer or smaller registries, increasing the capabilities and data linkage of existing registries and producing case studies that can clearly demonstrate for the public and policy makers how valuable registries are.”

To deliver on these national ambitions, the Centre has engaged specialised expertise with Project Manager Tamara Hooper and Senior Project Officer Sarah Eley.

Ms Hooper comes from a Project Management role with Health Translation SA. Prior to that she established the TAVI Registry and has served as Project Manager leading the Registry-Nested Clinical Trials portfolio within the Australian Orthopaedic Association National Joint Replacement Registry and as a Project Coordinator at the Australian Research Data Commons (ARDC).

Across these positions, Ms Hooper has project managed two large NHMRC grants related to the assessment of the appropriateness of care for adults and children and has held commercial healthcare roles nationally within the education, marketing and sales environment. Her healthcare experience also includes intensive care unit (ICU) nursing, clinical trials, clinical practice improvement and safety and quality.

Ms Eley has 15 years’ experience in communications, engagement and business development in health and business research. She currently leads the consumer and community involvement portfolio at Health Translation SA where she is focused on building the infrastructure and supports required for research teams to effectively and meaningfully collaborate with members of the community on research projects.

The SAHMRI Registry Centre was established in 2018 and now includes 20 member registries covering a broad variety of conditions or procedures including cancers, organ and joint transplantation and aged care. Four registries – ROSA, the Australia and New Zealand Dialysis and Transplant Registry, the Australian Particle Therapy Clinical Quality Registry and TAVI – sit within SAHMRI’s Adelaide headquarters, while the remainder sit externally but collaborate closely to draw on the Centre’s expertise and other resources.