OBJECTIVES: Patient engagement has the potential to improve the delivery of healthcare, decrease healthcare costs, and improve research quality and efficiency. Ensuring diverse patient engagement is also necessary for addressing disparities in outcomes, access, and patient experience. However, many interested in patient engagement lack the knowledge on how to support and sustain collaborative relationships with members of under-represented (i.e. equity-deserving) patient groups. To aid these efforts, this review seeks to synthesize barriers and facilitators supporting the recruitment and engagement of diverse populations into patient engagement groups.

METHODS: Electronic databases MEDLINE, EMBASE, PsycINFO, CINAHL, and Scopus were systematically searched for peer-reviewed articles published before July 19, 2023. The review was conducted following Levac, Colquhon, and O’Brien’s updated scoping review methodology. Two authors screened titles, abstracts, and full texts independently to determine inclusion, and extracted data from eligible full-text publications for quantitative and qualitative analysis.

RESULTS: Forty-four studies met the inclusion criteria. Recruitment barriers included alienating recruitment materials or criteria, mistrust, caregiving responsibilities, geographic and logistical barriers, and lack of community knowledge regarding the group, the role, or referral processes. Conversely, recruitment is facilitated when organizers engage with communities and demonstrate understanding of subpopulations needs and profiles, provide appropriate and relevant information in ads, and employ healthcare organization and community-driven recruitment methods. Barriers to patient engagement included providing inadequate training, scientific illiteracy, and language proficiency, discomfort with or lack of access to technology. Mistrust of organizations may be perpetuated through tokenism and not valuing diverse forms of knowledge. Facilitators of engagement included providing accommodation, building trust, demonstrating expertise is valued, and promoting equity between members and organizers.

CONCLUSIONS: Our review highlights concrete recommendations healthcare policy makers, researchers, and administrators should consider to ensure effective recruitment and meaningful engagement of diverse patients.