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

Abstract

Background: 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).

Objective: 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.

Design: Qualitative interview study.

Participants: Twelve members of the inter-disciplinary research team.

Approach: 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.

Conclusions: 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.

Keywords: aging; community-based participatory research; evaluation; patient-centered outcomes research; qualitative research.