SAHMRI Registry Centre

Tamara is currently employed by the SAHMRI Registry Centre as a Project Manager. Tamara’s recent roles included Project Manager at Health Translation SA and Project Coordinator at the Australian Research Data Commons (ARDC), Project Manager leading the Registry-Nested Clinical Trials portfolio within the Australian Orthopaedic Association National Joint Replacement Registry and prior to that established the ACOR TAVI Registry.
Tamara has project managed two large NHMRC grants related to the assessment of the appropriateness of care for adults and children. She has held commercial healthcare roles nationally within the education, marketing and sales environment. Her healthcare experience also includes Intensive Care (ICU) Nursing, Clinical Trials, Clinical Practice Improvement, and Safety and Quality within the health service sector.

Please tell us about your background and role at SAHMRI
I’m the Project Manager at South Australian Health and Medical Research Institute’s (SAHMRI) Registry Centre a centre of excellence for
registries and registry science. My role reports to the Centre Strategic Director, Cindy Turner.
Primarily I manage four projects, funded by the Department of Health and Aged Care (the Department), which are part of the National
Clinical Quality Registry Program (National CQR Program). My role can vary day-to-day, depending on the nature of activities (education events, grants) and our interaction with each registry. My experience within the registry sector started in 2017 and included senior roles in the following registries: Transcatheter Aortic Valve Implantation (TAVI) and Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR).

What is the SAHMRI Registry Centre?
The Centre is a collaboration of registries and provides a shared learning environment by delivering high quality education opportunities that build capacity within the clinical quality registry sector.
The Centre uses a model of project delivery through centralised project management. This uses our expertise to expand and enhance
best practices in registry science while driving innovation and development across member registries and the broader CQR sector where
appropriate.
Registries that form the SAHMRI Registry Centre (the Centre) encompass a broad range of health topics covering many of the National Health Priority Areas. The Centre registries include the areas of aged care quality and safety, cancer, cardiovascular conditions, musculoskeletal health, kidney dialysis, organ transplant, spinal injuries, cerebral palsy and other birth defects, and many
other health issues.
To date there are 24 member registries – some large such as the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and Registry of Senior Australians (ROSA), while many are much smaller. These include health service registries, disease registries and product registries. Some are located within the SAHMRI building, while some are based externally.

Are you a member of CQR SIG?
SAHMRI Registry Centre staff are members of the SIG as well as many of our member registries e.g. ANZDATA, ROSA, TAVI and Australian Particle Therapy Clinical Quality Registry (ASPIRE).

Does the SAHMRI Registry Centre have other roles with ACTA?
The Centre has collaborated on a number of initiatives, including the CQR Hub. The CQR Hub is a project conducted in collaboration with Monash University, SAHMRI Registry Centre and the CQR SIG at ACTA. Collectively, it includes:

• The Annual SAHMRI Registry Symposium
• ACTA’s Australian Clinical Registry Annual Scientific Meeting (ASM)
• Regular Registry Special Interest Group (CQR SIG) webinars and meetings
• A sector newsletter ‘The Benchmark’ which is published quarterly
• Contribution to national consultations such as Australian Framework for National CQRs, Individual Healthcare Identifiers
• Participation in sector wide projects, including those coordinated and supported by ACTA.

What is the advisory service you are involved with?
With support from the Department of Health and Aged Care under the National Clinical Quality Registry Program, the Centre has been piloting a CQR Advisory Service. This initiative supports the delivery of several projects with a central focus on promoting best practice and communicating health outcomes to the public. The Advisory Service is available to anyone who contacts us and is a fantastic service where we can help people work out if a CQR is appropriate and feasible to answer their research questions/problem (it often is), and if so, we can help them establish it and get it off the ground. Importantly, the Centre can also provide advice around bringing existing registries into line with the Australian Framework for National CQRs. We also have the expertise to advise around key areas such
as how to link registry data, how to collaborate with other registries, how to undertake internal audits, and we can also help with consumer involvement and grant applications for registry centre members. So, feel free to contact us at: registrycentre@sahmri.com

It sounds like you bring a lot of people together?
That is certainly part of the role. We also have meetings across the Centre network, which is like a community of practice for the registries here. We are always happy to collaborate and support the sector.

Are there any challenges that you have in your role?
Registries are really important, but struggle with challenges around sustainable funding like others in the healthcare sector. I hope this
changes as the benefits and impact of registries gets greater widespread recognition, especially when the outputs they produce drive ongoing enhancements in safety and quality to improve health outcomes or utilised for important research initiatives. There are other hurdles too of course, such as data privacy concerns and the use of data, especially when registries link together. Again, this
is a relatively new area, so it would be great to see this all of this more streamlined and efficient.

What do you feel the sector needs and how can ACTA support?
The Department recognises the potential of registries and are supportive of their growth through the National CQR Program as are the
Australian Commission on Safety and Quality in Health Care who recently released the Framework for National CQRs (2024). With this support there are opportunities for registries to work together, building on the experience of some of our longstanding registries.
ACTA plays an important role in promoting clinical trials and have taken on a broader role recently with the clinical registry symposium. There is enormous potential for ACTA to take a lead role in the CQR Sector during this important time of change and development for Australian CQRs. I look forward to working more closely with ACTA and seeing the CQR Sector develop and grow acknowledging the potential of clinical registries to enhance patient outcomes for all Australians.