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Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute
Laura P Forsythe1, Kristin L Carman2, Victoria Szydlowski3
1Laura P. Forsythe ( Lforsythe@pcori.org ) is director of the Evaluation and Analysis program at the Patient-Centered Outcomes Research Institute (PCORI), in Washington, D.C.
Patient and stakeholder engagement in research ensures health decisions are informed by useful evidence. This engagement enhances research relevance by aligning studies with real-world patient and clinician needs.
Area of Science:
- Health Services Research
- Patient and Stakeholder Engagement
Background:
- Patient-Centered Outcomes Research Institute (PCORI) mandates patient and stakeholder involvement in research.
- Published articles often detail research findings and the role of engagement.
Purpose of the Study:
- To analyze engagement approaches and contributions in research.
- To inform best practices for patient and stakeholder engagement in research.
Main Methods:
- Analysis of 126 articles describing engagement in research.
- Examination of how patients and stakeholders were involved.
Main Results:
- Engagement occurred in study design, outcome selection, intervention tailoring, and participant enrollment.
- Engagement was reported to improve research feasibility, acceptability, rigor, and relevance.
- Some trade-offs associated with engagement were noted.
Conclusions:
- Patient and stakeholder engagement is crucial for producing evidence that informs health decisions.
- Engagement can enhance research relevance by aligning it with practical needs and concerns.
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