Department of Quantitative Health Sciences, Division of Health Informatics and Implementation Science
Community-Based Research | Community Health and Preventive Medicine | Health and Medical Administration | Health Services Administration | Health Services Research | Translational Medical Research
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.
Patient-centered outcomes research, community engagement, community-based participatory research, community-engaged research, research infrastructure, stakeholder-engaged research
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© 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.
DOI of Published Version
J Clin Transl Sci. 2018 Aug;2(4):228-233. doi: 10.1017/cts.2018.325. Link to article on publisher's site
Journal of clinical and translational science
Nease DE, Burton D, Cutrona SL, Edmundson L, Krist AH, Laws MB, Tamez M. (2018). "Our lab is the community": Defining essential supporting infrastructure in engagement research. Population and Quantitative Health Sciences Publications. https://doi.org/10.1017/cts.2018.325. Retrieved from https://escholarship.umassmed.edu/qhs_pp/1267
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 License.
Community-Based Research Commons, Community Health and Preventive Medicine Commons, Health and Medical Administration Commons, Health Services Administration Commons, Health Services Research Commons, Translational Medical Research Commons