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Facilitating consumer partnerships in health research

Raluca Ghebosu, Leonie Young, Benedette Watson, Merran Williams, Ashley Dedmon, Jo Maxwell, Erik W. Thompson, Fernando Souza-Fonseca-Guimaraes, Joy Wolfram

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Consumer engagement and involvement in health research is a well-established and growing priority for a better-informed public, a broader voice for research in relation to impact and funding, and guidance toward issues that matter most to consumers. These well recognized benefits of consumer engagement in research can be strengthened through training. Methods: We describe a workshop for health researchers and consumers that was designed to provide a networking opportunity and introductory training, drawing from experience in Australia and the United States. Participants completed pre- and post-workshop surveys to assess the impact of the workshop. Results: The workshop led to enhanced consumer awareness of contributions that can be made to all stages of the research cycle. Researchers who participated in the workshop had improved confidence and understanding of how to build partnerships with consumers. The development of sustainable financial models to provide ongoing training opportunities for consumers and researchers was identified as a critical priority. The workshop also led to the establishment of a new model that classifies consumer contributions to research into three tiers, based on varying levels of time commitment, training, scientific understanding, and managerial skills. Conclusion: The workshop was well received as a networking and training opportunity, complementing other training frameworks for consumers and researchers. Training, funding, and supportive institutional policies were identified as key enablers for effective collaboration between consumers and researchers.

Original languageEnglish (US)
Article number990
JournalJournal of Translational Medicine
Volume23
Issue number1
DOIs
StatePublished - Sep 22 2025

Keywords

  • Co-design
  • Collaboration
  • Lived experience
  • Patient advocate
  • Patient and public involvement
  • Patient partner
  • Training
  • Workshop

ASJC Scopus subject areas

  • General Medicine
  • General Biochemistry, Genetics and Molecular Biology

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