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

Patient engagement in research is the meaningful and active involvement of patient/caregiver partners (i.e., patients and their family/friends) in research priority-setting, conduct, and governance. With the proper support, patient/caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement. This participatory qualitative study answered the question: What are the facilitators and barriers to patient engagement experienced by patient/caregiver partners in a Canadian research context? Participants were N = 13 patient/caregiver partners (Mage = 62 years, 85% women; 100% White) from four provinces who completed 60-90-minute semi-structured online interviews. The interviews were transcribed verbatim. One researcher and one patient/caregiver 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 seven patient/caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives. Four themes depicted 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) Educating the public, patient/caregiver partners, and researchers. We then discuss how barriers to enacting these four factors can be mitigated and provide a practical checklist of considerations for both researchers and patient/caregiver partners for engaging together throughout the research cycle. Researchers and patient/caregiver partners should draw from our findings to mitigate engagement barriers and facilitate meaningful engagement experiences.