Demystifying the health research experience for consumers

Sydney Health Partners has teamed up with hospital consumer groups to produce a unique brochure which encourages consumer involvement in health and medical research. The brochure outlines the common steps in the research process and shows the many ways consumers can work with researchers to improve healthcare in Australia.

Co-produced by consumers, researchers and communications experts, the brochure is designed to broaden the view of what taking part in research looks like for the average person.

Western Sydney Local Health District (WSLHD) Consumer and Community Partnerships Facilitator Dr Coralie Wales co-led the project with Sydney Health Partners’ Research Director, Associate Professor Angela Todd and Project Manager, Linda Komarek.

“With this project, we wanted to go right back to the beginning and help consumers understand what the potential to get involved with health research was,” said Dr Wales.

“When research involves consumers, we end up with more important and meaningful research,” she said. “But it’s often taken for granted that consumers should be the subjects of research, rather than being involved as experts in their own care and experience, able to provide valuable insights to shape the direction of, and contribute to, health research.”

The brochure steps through the research cycle, something that, while second nature to researchers and clinicians, may be wholly unfamiliar to consumers. It shows how, at each stage, consumers can contribute to the process and includes quotes from consumers about what inspired them to become involved in research, and what difference they felt they made.

“For many outside the clinical research world, taking part in health research can be a scary prospect – conjuring images of needles, or the feeling of being treated like a guinea pig – when that’s just not the case” said Associate Professor Todd.  “By showing the different ways people can get involved, we hope to broaden the idea of what research means to people.”

The aim of the project was to communicate to consumers the value of being involved in health research, not as a study participant or subject, but as a partner in the research process, through a brochure that can be distributed within hospitals and other healthcare settings, as well as shared online.

The idea of partnership was central to the creation process, with over 100 consumers in established hospital consumer groups across Sydney Health Partners invited to give their input through an iterative process.

“This process of deep consultation nets amazing outcomes,” said Dr Wales. “When you look at the finished product, it’s completely different to what we started with, but it’s better because it speaks right away to its audience and the intention of the project.”

This deep consultation across the Partnership meant that local versions could be produced for different Health Districts, alongside a generic version.

Production of the brochure follows a research report led by Associate Professor Todd in 2017 that identified key areas of improvement for involving consumers in research.  “We found that one of the ways to have more consumers take part in research was to foster greater awareness of the research process and the many ways people can be involved,” she said.

Sydney Health Partners has a strong commitment to elevating the voices of consumers in health care and health research, positioning consumer and community involvement as one of its five Strategic Platforms for Research Translation. Sydney Health Partners also co-leads the national consumer and community involvement initiative for the Australian Health Research Alliance (AHRA).

AHRA recently reasserted this commitment by issuing a position statement co-signed by the Consumers Health Forum of Australia.

“Sydney Health Partners and AHRA are committed to strengthening the involvement of consumers and the community in health research.  There are so many opportunities for consumers to get involved in research, and even a small contribution can make a big difference,” said Associate Professor Todd.

The generic web version of the brochure is available for download on the Sydney Health Partners website.