Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Heather M. Young, Sheridan Miyamoto, Stuart Henderson, Madan Dharmar, Margaret Hitchcock, Sarina Fazio, Yajarayma Tang-Feldman

Research output: Contribution to journalArticlepeer-review

8 Scopus citations


Patient engagement in research improves trustworthiness of the research findings, increases relevance, and ensures designs include the most meaningful outcomes for patients living with targeted health conditions. The Patient Centered Outcomes Research Institute (PCORI) requires engagement of patient stakeholders. There is limited description of both the context and the processes used to engage patients effectively. This paper discusses engagement activities, roles and responsibilities, value of a Patient Advisory Board (PAB), and lessons learned. Data include program notes, research team reflections, PCORI reporting, and an advisor survey. Facilitators of meaningful engagement included creating a learning community, co-defining clear roles, reimbursing advisors, establishing clear avenues for communication, and welcoming unique contributions. Lessons learned were the value of time, the importance of building trust, and the benefits of diverse perspectives. The approach to meaningful engagement of patient advisors in research has the potential to enhance the relevance and usefulness of research for improving lives.

Original languageEnglish (US)
Pages (from-to)905-914
Number of pages10
JournalWestern Journal of Nursing Research
Issue number10
StatePublished - Oct 2021

All Science Journal Classification (ASJC) codes

  • General Nursing


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