Integrating consumer engagement in medical research
Consumer engagement in health and medical research, as a social process, is informed by consumer knowledge and experience, addressing priorities and managing finite resources. With its statewide focus, research at South Australian Health and Medical Research Institute (SAHMRI) covers a range of themes with varying levels of consumer participation, including nutrition, Aboriginal health and infant and maternal health. Recognising the need to build consumer engagement into its operations at a macro level, in partnership with the Health Consumers Alliance of South Australia (HCASA), SAHMRI brought consumers, scientists and researchers together into conversation to develop a practical, evidence-based, whole-of-institute framework for consumer engagement and community participation.
The SAHMRI framework arranges seventeen operational elements under four organisational domaine 1) governance; 2) infrastructure 3) capacity building; and, 4) leadership and culture. It incorporates the IAP2’s five levels of participation (inform, consult, involve, collaborate, empower) and corresponds to three phases of health and medical research: preparation, execution, and translation.
The framework’s co-design calls for community-researcher interaction, priority-setting, partnerships aligned to SAHMRI research themes, mandated consumer engagement for grant applications and acknowledgements in organisational statements.
The consultation also generated a set of principles to support the framework. It should:
enable the collaborative setting of research priorities;
support community contribution in research;
communicate the extent of participation;
and, be sustainable by including all stakeholders.
In addition to facilitating input, the framework should also be responsive to how stakeholders seek to participate and offer opportunities for capacity building.
Caroline L. Miller, Kathy Mott, Michael Cousins, Stephanie Miller, Anne Johnson, Tony Lawson and Steve Wesselingh.‘Integrating consumer engagement in health and medical research–an Australian framework’, Health Research Policy and Systems, February 2017.
Caroline Miller is Beacon Senior Research Fellow in the School of Public Health at the University of Adelaide. Kathy Mott is Senior Manager at the South Australian Health and Medical Research Institute (SAHMRI). Michael Cousins is Chief Executive of the Health Consumers Alliance of South Australia (HCASA). Stephanie Miller is a member of the board at the Population Health Research Network. Anne Johnson is a collaborator at HCASA, and a Member of the Order of Australia. Tony Lawson is a member of the board at the Consumers Health Forum of Australia. Steve Wesselingh is the Executive Director of SAHMRI.
Photo: Nik MacMillan/Unsplash/cc