These are the key findings of a new paper published in the latest issue of Public Health Research & Practice, a journal of the Sax Institute, and based on consultation conducted by Sydney Heath Partners.

The consultations were held with members of health consumer networks in Sydney, Northern Sydney and Western Sydney Local Health Districts, and the Sydney Children’s Hospitals Network (at Westmead) about how to better involve consumers in health research.

The paper, written by University of Sydney Associate Professor Angela Todd and Professor Don Nutbeam of the School of Public Health at the University, reports that consumers want communications that more clearly explain the research, why it is relevant to them and what their participation might involve.

Feedback from 20 volunteers suggested that consumer involvement in research would be improved if consumers understood more about research.

“People want to be involved in health research, and have valuable contributions to make,” said Associate Professor Todd. “We researchers need to get a great deal better at communicating benefits and risks.”

The paper also reports that consumers would be more likely to be involved in research if they felt their contributions would be heard and respected - and if being involved in research was made an easy and positive experience.

“We received consistent and clear advice that researchers need to be willing to really listen.  Our participants also spoke of discourteous and inconsiderate behaviour - especially with respect to people’s time and convenience. They suggested simple logistical improvements, such as quickly reimbursing parking costs and scheduling flexibility, would make a real difference.”

Additional practical suggestions received to facilitate consumer involvement in research included:

Associate Professor Todd said it also became clear from the feedback that consumers want researchers to be respectful and honest with them.
“Patients and carers want researchers to listen and acknowledge what they say and to accept and value the knowledge they bring from their lived experiences with illness.”The full paper can be read here: