"Our lab is the community": Defining essential supporting infrastructure in engagement research
AuthorsNease, Donald E. Jr.
Cutrona, Sarah L.
Krist, Alex H.
Laws, Michael Barton
UMass Chan AffiliationsDepartment of Quantitative Health Sciences, Division of Health Informatics and Implementation Science
Document TypeJournal Article
KeywordsPatient-centered outcomes research
community-based participatory research
Community Health and Preventive Medicine
Health and Medical Administration
Health Services Administration
Health Services Research
Translational Medical Research
MetadataShow full item record
AbstractIntroduction: 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.
J Clin Transl Sci. 2018 Aug;2(4):228-233. doi: 10.1017/cts.2018.325. Link to article on publisher's site
Permanent Link to this Itemhttp://hdl.handle.net/20.500.14038/46799
Rights© The Association for Clinical and Translational Science 2018. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Except where otherwise noted, this item's license is described as © The Association for Clinical and Translational Science 2018. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
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