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 patientcentered 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-topeer 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.

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

“…This should follow relevant communication channels developed during the CE process using easily understandable language. 92 Discussing the research results is important to check if the interpretation of the research team was correct. Involving the CAB or other community members who participated in the research process, in screening lay publications and in advising the research team, is important.…”

Exploring the perspectives of community members as research partners in rural and remote areas

“…As mentioned by participants in the current study, identifying community champions related to a specific project or issue is best achieved through a focus on forming partnerships and understanding preferred local communication mechanisms [17]. Involving cultural or knowledge brokers is one approach to assist researchers to understand community context and identify people on the ground doing related work, this may be a particularly effective strategy when working with rural and remote communities that are a greater distance from researchers and where contextual factors are less well understood [32,33].…”

“…Community ownership and empowerment in research is best achieved with authentic partnerships, requires a transfer of power from researchers to communities, and the establishment of trust in the researcher [34]. Strategies to support community ownership of data, common in Indigenous and other participatory research approaches, include relationship building, equitable compensation, and sustained bidirectional communication with continual process evaluation [17,32]. Specific characteristics on the part of the researcher such as willingness to spend time building relationships, humility, and determination to engage in community-centred research should also be considered [34].…”

Evaluation of Peer-to-Peer Support and Health Care Utilization Among Community-Dwelling Older Adults

“…We conducted an observational, longitudinal, comparative effectiveness study in 3 communities in the US: Los Angeles, California; Rochester, New York; and West Palm Beach, Florida. 9 The community-based organizations with which we partnered serve racially and ethnically diverse older adults. The Western Institutional Review Board approved the study protocol and informed consent documents; all participants provided written informed consent.…”