Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study

Abstract

Background: Patient engagement in research is the meaningful and active involvement of patient and caregiver partners (ie, patients and their family or friends) in research priority-setting, conduct, and governance. With the proper support, patient and caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.

Objective: This participatory qualitative study aimed to answer the question: What are the facilitators and barriers to patient engagement experienced by patient and caregiver partners in a Canadian research context?

Methods: Participants were N=13 patient and caregiver partners (median age 62 y, IQR 58-69 y; 11/13, 85% women; 13/13, 100% White) from 4 provinces who completed 60-90-minute semistructured videoconferencing interviews. The interviews were transcribed verbatim. A researcher and a patient partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using participatory theme elicitation alongside 7 patient and caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.

Results: We generated four themes depicting factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations; (2) demonstrating the value and impact of engagement; (3) psychological safety; and (4) community outreach, training, and education. We then discuss how barriers to enacting these 4 factors can be mitigated and provide a practical checklist of considerations for both researchers and patient and caregiver partners for engaging together throughout the research cycle.

Conclusions: Research teams conducting patient and caregiver engagement activities should draw from our findings to mitigate barriers and facilitate meaningful engagement experiences.

Keywords: co-analysis; participatory research; patient partnership; patient-oriented research; public and patient engagement.

Figure 1.. Patient-caregiver partner engagement throughout the research process.

Figure 2.. Summary of thematic results.