Increasing Meaningful Consumer and Community Involvement

Research projects have the potential to improve health services and outcomes for patients, but effectively engaging consumers and the community can enhance research and translation success, according to Dr Darshini Ayton and Dr Sandy Braaf.

Drs Ayton and Braaf are two Monash Partners Fellows currently undertaking a Consumer and Community Involvement (CCI) capacity building project. Their project is a response to a lack of CCI involvement by researchers and health professionals despite its many benefits.

“Researchers often seek input from consumers and the community after the scope of their project has been defined,” says Dr Ayton, giving one example.

“What they ought to do instead is seek input that informs the direction and scope of their research from the outset.”

Consumer organisations such as Cancer Council Victoria (CCV) have insight into the needs and concerns of patients, and consulting organisations like CCV will be highlighted in the CCI Guidelines as an important early step in any research project.

“The challenge for many researchers is working out how to involve consumers and the community in ways that are meaningful, rather than tokenistic,” says Dr Braaf.

“Asking consumers and the organisations that represent them what their concerns are, and what are priority areas they would like medical research to address, is a start to meaningful involvement.”

Taking heed of consumer and community concerns also encourages researchers to address gaps that better translate into service improvements, their research has found.

There are significant, but not insurmountable, challenges that will require ongoing attention, admit Drs Ayton and Braaf. Some researchers and health professionals report that they do not know where to find consumers or how to involve them in their research. Some are also concerned about working and co-designing research with consumers, and others are worried about the extra time it can take to involve consumers in research.

Despite these challenges, Drs Ayton and Braaf are optimistic about the impact their work will have, by emphasising the benefits of CCI and building capacity in researchers and health professionals to undertake CCI their work.

“A common maxim of public health practitioners is ‘make the healthy choice the easy choice’,” says Dr Ayton.

“What Sandy and I are hoping to achieve through our CCI capacity-building project making the meaningful CCI choice the easy choice for researchers.”

The CCI capacity-building project commenced in early 2019 and is expected to conclude in December 2019. The Monash Partners Fellowships have been funded through the Australian Government’s Medical Research Futures Fund.

For more information regarding the project contact Dr Ayton at darshini.ayton@monash.edu or Dr Braaf at sandra.braaf@monash.edu.