Journal of General Internal Medicine

, Volume 34, Issue 1, pp 125–131 | Cite as

Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, Involving Academic and Community-Based Organizations

  • Laura T. Pinsoneault
  • Emily R. ConnorsEmail author
  • Elizabeth A. Jacobs
  • Jerica Broeckling
Original Research



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.

Key Results

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.


patient-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.

Supplementary material

11606_2018_4701_MOESM1_ESM.pdf (229 kb)
ESM 1 (PDF 228 kb)
11606_2018_4701_MOESM2_ESM.pdf (190 kb)
ESM 2 (PDF 189 kb)


  1. 1.
    PCORI (2018a). About us. Retrieved August 28, 2018, from
  2. 2.
    Ahmed S, Palermo A. Community engagement in research: frameworks for education and peer review. Am J Public Health., 2010;100(8), 1380.CrossRefGoogle Scholar
  3. 3.
    PCORI (2018b). Public comments for PCORI’s national priorities and research agenda. Retrieved August 28, 2018, from
  4. 4.
    Fleurence R, Selby JV, Odom-Walker K, Hunt G, Meltzer D, Slutsky JR, Yancy C. How the patient-centered outcomes research institute is engaging patients and others in shaping its research agenda. Health Affairs. 2013;32(2), 393–400.CrossRefGoogle Scholar
  5. 5.
    Thompson VLS, Drake B, James AS, Norfolk M, Goodman M, Ashford L, Jackson S, Witherspoon M, Brewster M, Colditz G. A community coalition to address cancer disparities: transitions, successes and challenges. J Cancer Educ. 2014;30(4), 616–622.CrossRefGoogle Scholar
  6. 6.
    Hasnain-Wynia R, Beal AC. Role of the patient-centered outcomes research institute in addressing disparities and engaging patients in clinical research. Clin Ther. 2014;36 (4), 619–623.CrossRefGoogle Scholar
  7. 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
  8. 8.
    Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health. 2010;100 (Suppl 1), 40–46.CrossRefGoogle Scholar
  9. 9.
    Ellis LE, Kass NE. How are PCORI-funded researchers engaging patients in research and what are the ethical implications? AJOB Empirical Bioethics. 2017;8 (1), 1–10.CrossRefGoogle Scholar
  10. 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
  11. 11.
    Gurke JG, Jones J, Yonas M, Guizzetti L, Virata M, Costlow M, Morton S, Elizabeth M. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research?. Clin Transl Sci. 2013; 6 (6), 493–496.CrossRefGoogle Scholar
  12. 12.
    PCORI. (2015a). What we mean by engagement. Retrieved August 28, 2018, from
  13. 13.
    Ehlers AP, Davidson GH, Deeney K, Talan D. Methods for incorporating stakeholder engagement into clinical trial design. Generating Evidence & Methods to improve patient outcomes (eGEMs), 2017;5(1), 1–7.CrossRefGoogle Scholar
  14. 14.
    Goodman MS, Sanders Thompson VL. The science of stakeholder engagement in research: classification, implementation, and evaluation. Transl Behav Med.2017;7(3), 486–491.CrossRefGoogle Scholar
  15. 15.
    Forsythe L, Heckert A, Margolis MK, Schrandt S, Frank L. Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute. Qual Life Res. 2018;27 (1), 17–31.CrossRefGoogle Scholar
  16. 16.
    U.S. National Library of Medicine, Retrieved August 28, 2018, from
  17. 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. 18.
    Glasser, B. The constant comparative method of qualitative analysis. grounded theory review: an international journal, 2008;7 (3).Google Scholar
  19. 19.
    PCORI. (2015b). PCORI engagement rubric. Retrieved August 28, 2018, from
  20. 20.
    Georgetown National Center for Cultural Competence. (2017). Cultural brokering. Retrieved August 28, 2018, from
  21. 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
  22. 22.
    Chi DL, Milgrom P, Gillette J. Engaging stakeholders in patient-centered outcomes research regarding school-based sealant programs. J Dent Hyg. 2018;92(1):16–22PubMedGoogle Scholar
  23. 23.
    Greene SM, Brandzel S, Wernli KJ. From principles to practice: real-world patient and stakeholder engagement in breast cancer research. Perm J. 2018;22:17–232.PubMedCentralGoogle Scholar

Copyright information

© Society of General Internal Medicine 2018

Authors and Affiliations

  • Laura T. Pinsoneault
    • 1
  • Emily R. Connors
    • 2
    Email author
  • Elizabeth A. Jacobs
    • 3
  • Jerica Broeckling
    • 4
  1. 1.Spark Policy InstituteDenverUSA
  2. 2.Clinical and Translational Science Institute Medical College of WisconsinMilwaukeeUSA
  3. 3.Dell Medical SchoolUniversity of Texas at AustinAustinUSA
  4. 4.Alliance for Strong Families and CommunitiesMilwaukeeUSA

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