Abstract

BackgroundDespite increasing commitment to patient engagement in research, evaluation of the impact of these efforts on research processes, products, and teams is limited.ObjectiveTo explore the impacts of engaging patients as consultants to research studies by examining the experiences, impacts, and lessons learned from a program facilitating patient engagement at a Veterans Health Administration research center.DesignWe developed a logic model to articulate the activities being implemented to support patient engagement and their anticipated outcomes. Then, we conducted qualitative, semi-structured interviews with participants in the local Veteran Consulting Network to qualitatively explore these outcomes.ParticipantsTwelve researchers and eleven Veteran patients with experience working on at least one grant or funded study.ApproachInterview transcripts were inductively coded using a consensus-based approach. Findings were synthesized using framework analysis and mapped back onto our logic model of expected patient engagement impacts.Key ResultsPatient engagement improved the perceived quality and relevance of research studies as patient consultants challenged researchers’ assumptions about patient populations and clinical contexts and gave feedback that helped improve the feasibility of proposed grants, readability of study materials, comprehensiveness of study assessments, and cultural sensitivity and relevance of interventions. Patient engagement also had personal benefits to researchers and patients. Researchers reported improved communication skills and higher job satisfaction. Patients reported a sense of purpose and satisfaction from their work with greater awareness of and appreciation for research.ConclusionsEngaging patients in research can have multiple benefits to the people and work involved. Our evaluation process can serve as a template for other organizations to plan for and assess the impact of their own patient engagement programs. Creating logic models and updating them based on feedback from program users make engagement goals explicit, help verify expected mechanisms to achieve impact, and facilitate organizational learning.

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