Health and medical researchers have been told that integrated consumer and community involvement needs to exist as a partnership between the researcher and the community, and not just look like one.

That was the message from Breast Cancer Trials Australia Chief Operating Officer Heath Badger during a national webinar on consumer and community involvement (CCI) in clinical trials, jointly presented by Sydney Health Partners and fellow research translation centre, Monash Partners.

More than 200 people attended the webinar, which provided them with lessons learned and practical strategies for CCI from experienced consumers and clinical trialists.

Leonie Young, who is a member of the Consumer Advisory Panel of the ANZUP Cancer Trials Group said that engaging well with consumers means not just ticking the box.

“Consumers should be co-pilots and not just passengers in navigating the direction of consumer engagement in clinical trials,” she said. “There’s been so much work around the importance of the consumer perspective, that the onus is now on us as co-pilots to undertake the role of CCI responsibly and professionally.”

Nicola Straiton from the Australian Clinical Trials Alliance said the limited diversity of consumers involved in clinical research was something to reflect on.  “The lack of diversity and inclusion of underrepresented groups in clinical trials impacts the generalisability of trial results, and leads to unmet healthcare needs,” she said.

Professor Warwick Britton gave a presentation on the experiences of Sydney Local Health District and Royal Prince Alfred Hospital as a pilot site for the planned National Clinical Trials Governance Framework, which will be first step towards the accreditation of health service organisations for the provision of clinical trial services.

He said that the pilot highlighted the importance of consumer involvement in clinical trials, not just as participants but in planning and feedback.

Other presenters at the webinar included:

Watch the Full Webinar