TY - JOUR
T1 - Meaningful Engagement of Patient Advisors in Research
T2 - Towards Mutually Beneficial Relationships
AU - Young, Heather M.
AU - Miyamoto, Sheridan
AU - Henderson, Stuart
AU - Dharmar, Madan
AU - Hitchcock, Margaret
AU - Fazio, Sarina
AU - Tang-Feldman, Yajarayma
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Patient-Centered Outcomes Research Institute: IHS-1310-07894.
Publisher Copyright:
© The Author(s) 2020.
PY - 2021/10
Y1 - 2021/10
N2 - 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.
AB - 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.
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U2 - 10.1177/0193945920983332
DO - 10.1177/0193945920983332
M3 - Article
C2 - 33371791
AN - SCOPUS:85098484192
SN - 0193-9459
VL - 43
SP - 905
EP - 914
JO - Western Journal of Nursing Research
JF - Western Journal of Nursing Research
IS - 10
ER -