SHP and HCNSW Help Answer the “How” of Consumer and Community Involvement in Health Research

As the benefits of involving consumers and communities in research become more well-known and understood, funders and funding bodies are increasingly asking researchers to demonstrate consumer involvement in their research proposals.

But this doesn’t always translate to clear guidance, with many researchers left unsure how to achieve meaningful collaboration with the consumers and communities that their research is trying to help.

In 2020, Sydney Health Partners commenced working with Health Consumers NSW to help source and provide this information to both consumers and researchers alike through a partnership-wide environmental scan and combined training sessions.

Now, the partnership is being extended to deliver more introductory training sessions, as well as develop a new training module specifically for researchers who want more detailed advice and support about consumer and community involvement (CCI).

160 consumers, researchers and clinicians contributed to the 2020 scan, which found many examples of CCI across Sydney Health Partners, but also emphasised the need to develop a more connected and coordinated approach to supporting consumer and community involvement in health research.

“We found more than we were expecting across Sydney Health Partners in the environmental scan,” said Dr Anthony Brown, Executive Director of Health Consumers NSW. “But we also found that for new researchers and those early in their careers, there wasn’t a lot of practical information to help them get started.”

As COVID waylaid original plans for more intensive face-to-face training, the results of the scan provided surprising results: consumers and researchers alike, at least initially, wanted a combined approach to training.

In response, HCNSW delivered the introductory training module to combined groups of researchers and consumers from across the Partnership, sharing stories of successful research partnership that had been identified in the scan. Participants were also invited to jointly explore solutions to common barriers to consumer involvement in health research.

The sessions were well-received, with attendees leaving the session with an increased understanding of the benefits of consumer involvement in health research, as well as some introductory ideas about how best to work together.

The range of ways consumers can get involved in health research was also a talking point, with one consumer commenting, “I hadn’t realised that there are many opportunities for consumers to participate in research”.

“Researchers often come to us for help to ‘find a consumer’,” says SHP’s Research Director, Associate Professor Angela Todd, who leads the collaboration within SHP. “But it’s not just a matter of finding someone to tick a box, we want to encourage researchers to bring consumers along the journey with them from the beginning for genuine involvement.”

“The partnership with Sydney Health Partners was crucial to get this work up and running,” said Dr Brown. “It’s allowed us to work across the health services, medical research institutes and the University to provide early support at scale to a whole range of researchers, communities and consumers.”

A full report of the results of the environmental scan and training modules can be read here, and if you want to learn more about future SHP-HCNSW training sessions, visit the HCNSW Website and sign up for updates.