Refugee and migrants' involvement in participatory spaces in a US practice‐based research network study: Responding to unanticipated priorities

Abstract Background Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision‐making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient‐centred outcome research in practice‐based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient‐centred outcomes research (PCOR) study in a similar research network. Methods In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language‐discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis. Results Participants identified common barriers in language‐discordant healthcare settings, principally patient‐clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision‐making in consultations and the practice as a whole. Conclusion PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language‐discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion. Patient or Public Contribution Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript