Research Involvement and Engagement (Nov 2021)

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

  • Janet L. Wale,
  • Louisa Di Pietro,
  • Heather Renton,
  • Margaret Sahhar,
  • Christine Walker,
  • Pamela Williams,
  • Karen Meehan,
  • Elly Lynch,
  • Melissa Martyn,
  • Jane Bell,
  • Ingrid Winship,
  • Clara L. Gaff

DOI
https://doi.org/10.1186/s40900-021-00326-6
Journal volume & issue
Vol. 7, no. 1
pp. 1 – 12

Abstract

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Plain English summary Melbourne Genomics Health Alliance was established in 2013 to steer genomics into health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after to provide advice and insights from the patient perspective. The CAG has added value to the Alliance’s complex research-to-clinical service program of work over eight years to date. Following an explanation of the program, the CAG members identified priority areas and mechanisms for their involvement. Areas that members were involved in included: communication, visual identity and website, patient portal and its evaluation, information management, consent processes, laboratory requirements, tools for patient experience and quality of life measures, predictive health issues study, storage and sharing of data, databases, CAG Communication Plan, the Patient Guide, role with Victorian Government Department of Health and Human Services, implementation plan, workshop to upskill patient advocates, financial and strategic planning. Members also presented on the role of the CAG at conferences and symposia. The balanced, trusting relationship that developed between the CAG, the Program Team and its governance structure was of great value to and an achievement for the Alliance. CAG input into project deliverables and impact was recorded in a CAG inspired Activity Register and has been very tangible. Their less tangible contribution to the project is also important. Contributions included presentations at external meetings, direct interactions at annual meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government. These provided opportunities to influence mindsets.

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