Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

Abstract

Background The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. Main body The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. Conclusion The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.

Developing a national strategy of consumer and community involvement (CCI) for women’s health research

“…Similar to researchers, many consumers have differing and competing priorities and accommodating specific deadlines and/or meeting times is not always possible. Time allows for opportunities to build trust and strengthen relationships with consumers and consumer groups which can lead to more meaningful outcomes [ 29 ]. Javanparast and colleagues (2022) also highlight that taking the time to connect with consumers from consumer-led and peak body organisations is vital to consumer stakeholder involvement [ 27 ].…”

Community input in a genomic health implementation program: Perspectives of a community advisory group

“…Consumer and community engagement (CCE) in research and health care is working in partnership with end-users to improve processes and outcomes (Consumer Health Forum of Australia, 2016) and address the ethical premise that consumers have a right to provide input when issues affect them (Sarrami-Foroushani et al, 2014). For a discipline like genomics, which has extensive personal, familial, and social implications, there is a distinct need for CCE in research and health service implementation (Wale et al, 2021).…”