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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Univ Ottawa, Fac Med, Dept Med, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Hofstetter, Catherine
Grosskleg, Shawna
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Bruyere Res Inst, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Grosskleg, Shawna
Hamilton, Clayon B.
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Ottawa Hosp Res Inst, Clin Epidemiol Program, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Hamilton, Clayon B.
Hoens, Alison M.
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Univ Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Univ Ottawa, Fac Med, Sch Epidemiol & Publ Hlth, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Hoens, Alison M.
Shea, Beverley
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Bruyere Res Inst, WHO Collaborating Ctr Knowledge Translat & Hlth Te, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Shea, Beverley
Tugwell, Peter
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Univ Ottawa, Ottawa Hosp Res Inst, Clin Epidemiol Program, Div Rheumatol,Dept Med,Fac Med, Ottawa, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
Tugwell, Peter
Beaton, Dorcas
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Univ Toronto, Inst Work & Hlth, Inst Hlth Policy Management & Evaluat, Toronto, ON, CanadaUniv Ottawa, Fac Med, Dept Med, Ottawa, ON, Canada
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Penn State Univ, Dept Plant Sci, University Pk, PA 16802 USA
Penn State Univ, Huck Inst Life Sci, University Pk, PA 16802 USA
Netherlands Inst Ecol NIOO KNAW, Dept Microbial Ecol, Wageningen, NetherlandsPenn State Univ, Dept Plant Sci, University Pk, PA 16802 USA
Dini-Andreote, Francisco
Kowalchuk, George A.
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Univ Utrecht, Inst Environm Biol, Ecol & Biodivers, Utrecht, NetherlandsPenn State Univ, Dept Plant Sci, University Pk, PA 16802 USA
Kowalchuk, George A.
Prosser, James I.
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Univ Aberdeen, Sch Biol Sci, Aberdeen, ScotlandPenn State Univ, Dept Plant Sci, University Pk, PA 16802 USA
Prosser, James I.
Raaijmakers, Jos M.
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Netherlands Inst Ecol NIOO KNAW, Dept Microbial Ecol, Wageningen, Netherlands
Leiden Univ, Inst Biol, Leiden, NetherlandsPenn State Univ, Dept Plant Sci, University Pk, PA 16802 USA
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Honolulu Zoo Soc, 151 Kapahulu Ave, Honolulu, HI 96815 USASmithsonian Conservat Biol Inst, Ctr Species Survival, 1500 Remount Rd, Front Royal, VA 22633 USA
Carlstead, Kathy
Paris, Stephen
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Smithsonian Conservat Biol Inst, Ctr Species Survival, 1500 Remount Rd, Front Royal, VA 22633 USASmithsonian Conservat Biol Inst, Ctr Species Survival, 1500 Remount Rd, Front Royal, VA 22633 USA
Paris, Stephen
Brown, Janine L.
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Smithsonian Conservat Biol Inst, Ctr Species Survival, 1500 Remount Rd, Front Royal, VA 22633 USASmithsonian Conservat Biol Inst, Ctr Species Survival, 1500 Remount Rd, Front Royal, VA 22633 USA
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Durham Vet Affairs Hlth Care Syst, Durham, NC USA
Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, Durham, NC 27706 USA
Vet Affairs Hlth Serv Res & Dev, Durham Ctr Innovat Accelerate Discovery & Practic, Durham, NC USADurham Vet Affairs Hlth Care Syst, Durham, NC USA
Goldstein, Karen M.
Gierisch, Jennifer M.
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Durham Vet Affairs Hlth Care Syst, Durham, NC USA
Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, Durham, NC 27706 USA
Duke Univ, Dept Populat Hlth Sci, Durham, NC USADurham Vet Affairs Hlth Care Syst, Durham, NC USA
Gierisch, Jennifer M.
Tucker, Matthew
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Durham Vet Affairs Hlth Care Syst, Durham, NC USADurham Vet Affairs Hlth Care Syst, Durham, NC USA
Tucker, Matthew
Williams, John W., Jr.
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Durham Vet Affairs Hlth Care Syst, Durham, NC USA
Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, Durham, NC 27706 USADurham Vet Affairs Hlth Care Syst, Durham, NC USA
Williams, John W., Jr.
Dolor, Rowena J.
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Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, Durham, NC 27706 USADurham Vet Affairs Hlth Care Syst, Durham, NC USA
Dolor, Rowena J.
Henderson, Wendy
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Durham Vet Affairs Hlth Care Syst, Durham, NC USA
Duke Univ, Dept Med, Div Gen Internal Med, Sch Med, Durham, NC 27706 USADurham Vet Affairs Hlth Care Syst, Durham, NC USA