UMMS Affiliation

Department of Quantitative Health Sciences, Division of Health Informatics and Implementation Science

Publication Date

2018-08-01

Document Type

Article

Disciplines

Community-Based Research | Community Health and Preventive Medicine | Health and Medical Administration | Health Services Administration | Health Services Research | Translational Medical Research

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.

Keywords

Patient-centered outcomes research, community engagement, community-based participatory research, community-engaged research, research infrastructure, stakeholder-engaged research

Rights and Permissions

© 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

10.1017/cts.2018.325

Source

J Clin Transl Sci. 2018 Aug;2(4):228-233. doi: 10.1017/cts.2018.325. Link to article on publisher's site

Journal/Book/Conference Title

Journal of clinical and translational science

PubMed ID

30800479

Related Resources

Link to Article in PubMed

Creative Commons License

Creative Commons Attribution 4.0 License
This work is licensed under a Creative Commons Attribution 4.0 License.

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