“Our lab is the community”: Defining essential supporting infrastructure in engagement research
Year: 2018
Type: article
Study design: Observational Study
Abstract: INTRODUCTION: Effective patient engagement is central to patient-centered outcomes research. A well-designed infrastructure supports and facilitates patient engagement, enabling study development and implementation. We sought to understand infrastructure needs from recipients of Patient-Centered Outcomes Research Institute (PCORI) pilot grant awards. METHODS: We surveyed recipients of PCORI pilot project awards on self-perceived strengths in engagement infrastructure through PCORI's Ways of Engaging-Engagement Activity Tool survey, and interviewed leaders of 8 projects who volunteered as exemplars. Descriptive statistics summarized the survey findings. We conducted a thematic analysis of the interview transcripts. RESULTS: Of the 50 surveyed pilots, 22 answered the engagement infrastructure questions (44% response rate). Survey and interview findings emphasized the importance of committed institutional leadership, ongoing relationships with stakeholder organizations, and infrastructure funding through Clinical and Translational Science Awards, PCORI, and institutional discretionary funds. CONCLUSIONS: These findings highlight the importance of and how to improve upon existing institutional infrastructure.
DOI: 10.1017/cts.2018.325
Institutions: Colorado Clinical and Translational Sciences Institute, University of Colorado Anschutz, City University of New York, Hunter College, University of Massachusetts Chan Medical School, Veterans Health Administration, Edith Nourse Rogers Memorial Veterans Hospital, Center for Health Optimization and Implementation Research, Harvard University, Virginia Commonwealth University, Brown University
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,200
OpenAlex ID: W2902315482