Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, Involving Academic and Community-Based Organizations
In 2010, the Patient Centered Outcomes Research Institute (PCORI) was created to fund patient-centered research that meaningfully engages stakeholders impacted by that research. As a result, investigators became interested in understanding who are appropriate stakeholders and what meaningful engagement in research looks like (6, 8–10).
To understand how and when stakeholder engagement worked well and identify areas for enhancing engagement in a PCORI-funded research study of peer-to-peer support of older adults in three communities across the USA.
Qualitative interview study.
Twelve members of the inter-disciplinary research team.
Interviews were conducted via phone, recorded, and transcribed. Transcripts were analyzed using a constant comparative method to identify themes. Transcripts were independently coded; coded themes were discussed by a small group of the research team to check interpretation and clarify meaning. Once initial themes were identified, the interviews and codes were shared with an external consultant who recoded all 12 transcripts and conducted further analysis and interpretation. Documentation from research meetings was used to validate our findings.
Strategies for facilitating meaningful engagement in the partnership, proposal, study design, and planning phase were very similar to community-based participatory research and include the use of community to identify research needs, equitable compensation and leadership, and budgeting for engagement activities. Strategies in the data collection phase include the use of cultural brokers, weekly data calls between the academic PI and imbedded research assistants, and maintaining joint ownership for research.
Major funding institutions (e.g., NIH, PCORI) recognize that community engagement leads to higher quality, more meaningful research (7, 21). Our results support that assumption and in addition, suggest an investment in engagement strategies at the onset of a research project and the use of cultural brokers can greatly contribute to the success of implementing a large, multi-site research project.
KEY WORDSpatient-centered outcomes research qualitative research community-based participatory research aging evaluation
Financial support for this project was provided by PCORI, CER 1310-07844.
Compliance with Ethical Standards
Conflict of Interest
Emily Connors received consultation fees from the Alliance for Strong Families and Communities to analyze the qualitative data and support the development of this publication. All remaining authors declare that they do not have a conflict of interest.
- 1.PCORI (2018a). About us. Retrieved August 28, 2018, from https://www.pcori.org/about-us
- 3.PCORI (2018b). Public comments for PCORI’s national priorities and research agenda. Retrieved August 28, 2018, from https://www.pcori.org/research-results/research-we-support/national-priorities-and-research-agenda/how-we-developed-our-0
- 7.Selker HP, Wilkins CH. From community engagement to community-engaged research, to broadly engaged team science. Transl Sci. 2017;1(1), 5–6.Google Scholar
- 10.Minkler, M, Wallerstein, N. The growing support for CBPR. In Minkler M, Wallerstein N eds. Community-based participatory research for health: from process to outcomes (2nd, pp. 544) San Francisco: Jossey-Bass: 2008.Google Scholar
- 12.PCORI. (2015a). What we mean by engagement. Retrieved August 28, 2018, from http://www.pcori.org/funding-opportunities/what-we-mean-engagement
- 16.U.S. National Library of Medicine, ClinicalTrials.gov. Retrieved August 28, 2018, from https://www.clinicaltrials.gov/ct2/show/NCT02308696?term=peer+to+peer+support&rank=3
- 17.Society of General Internal Medicine. Abstracts from the 35th annual meeting of the society of general internal medicine, 2012 Apr;27(Suppl 2):99–574Google Scholar
- 18.Glasser, B. The constant comparative method of qualitative analysis. grounded theory review: an international journal, 2008;7 (3).Google Scholar
- 19.PCORI. (2015b). PCORI engagement rubric. Retrieved August 28, 2018, from http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf
- 20.Georgetown National Center for Cultural Competence. (2017). Cultural brokering. Retrieved August 28, 2018, from https://nccc.georgetown.edu/resources/brokering.html
- 21.Price A, Schroter S, Snow R, Hicks M, Harmston R, Staniszewska S, Parker S, Richards T. Frequency of reporting on patient and public involvement (PPI) in research studies published in general medical journal: a descriptive study. BMJ Open. 2018; 8(3).Google Scholar