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

被引:6
|
作者
Young, Heather M. [1 ]
Miyamoto, Sheridan [2 ]
Henderson, Stuart [3 ]
Dharmar, Madan [1 ]
Hitchcock, Margaret [4 ]
Fazio, Sarina [1 ]
Tang-Feldman, Yajarayma [1 ]
机构
[1] Univ Calif Davis, Betty Irene Moore Sch Nursing, Sacramento, CA 95817 USA
[2] Penn State Univ, Coll Nursing, State Coll, PA USA
[3] Univ Calif Davis, Sch Med, Sacramento, CA 95817 USA
[4] Publ Hlth Inst, Oakland, CA USA
关键词
Patient engagement; patient advisors; diabetes; patient-centered outcomes research; OUTCOMES RESEARCH; STAKEHOLDER ENGAGEMENT; INVOLVEMENT; CHALLENGES; CONSUMERS; HEALTH; MODEL;
D O I
10.1177/0193945920983332
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
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.
引用
收藏
页码:905 / 914
页数:10
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