What Australia’s Health Panel said about medical research participation- August 2021

As part of CHF’s ongoing research program, of which Australia’s Health Panel is a key component, we have partnered with The George Institute to be a consumer voice on the Join Us Register. The Join Us Register is an initiative that links Australians who are willing and interested in participating in health and medical research with researchers who are recruiting for research projects.

Join Us is aiming to address a known gap in the healthcare system: where despite consumers generally being willing to participate in research, they are largely unaware of medical research projects occurring in Australia and don’t discuss it as an option as part of their health care or health decision making.

However, CHF has also observed there is currently little research exploring why Australian consumers do or don’t participate in medical research beyond a ‘lack of awareness’, nor if any barriers exist that are causing this disconnect between the broader public and the medical research sector.

As such, for the Australia’s Health Panel survey in August 2021, asked what consumers knew about medical research, why they had/hadn’t participated in medical research and how they thought participation rates could be improved.

We found that Australians have a positive and accurate understanding of medical research in Australia and those who have personal experience participating in medical research largely have a positive experience.

Australians largely think that medical research is beneficial to themselves and the wider community, however standard practices around eligibility/exclusion criteria need to be reviewed to ensure that willing participants are not unnecessarily excluded and that results will be applicable to the wider population.

A range of participation enablers and barriers were identified and while none of them were overwhelmingly the most common; many of them were pragmatic ones that could be easily accounted for in research design processes. Primarily to maximise the ease for consumers to participate and secondarily to maximise the benefits of participating.

Lastly panellists were supportive of using a broad array of pathways to let people know about medical research participation- with a central location similar to the Join Us Register being the most preferred mechanism for consumers to proactively ‘sign up’ for opportunities.

CHF will use the results of this survey to continue to advocate for greater involvement of consumers in research as part of our research program by encouraging people to register with Join Us, by sharing research opportunities through our networks and by advocating for more consumers to be involved in the design of research projects. 

For the full report, download the file below. The Consumers Health Forum of Australia would like to thank all panellists for giving up their time to participate in this survey. Any questions about this survey and its findings can be directed to info@chf.org.au.