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

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.

Optimising individual and community involvement in health decision-making in general practice consultations and primary care settings: A way forward.

The World Health Organisation Alma-Ata Declaration on Primary Healthcare, and the more recent Astana Declaration from the Global Conference on Primary Healthcare, emphasise the involvement of individuals and communities in health decision-making about their individual health care, service delivery and policy development. Increasingly, health funding agencies and academic publishers like the BMJ require Public and Patient Involvement in health research. These imperatives cover health decision-making about different issues in different settings. In this position paper, I argue that individual and community involvement in health decision-making are core to, and useful for, the discipline of general practice but may not be equally familiar or routinised practices in European primary care settings. I use the social science concept of participatory spaces, to describe three overlapping forms of involvement - shared decision-making (SDM) in clinical care, community participation to develop services and Public and Patient Involvement in research. I refer to evidence of implementation challenges for these forms of involvement and provide insights about how to routinise them with reference to the need for these practices to make more sense to general practitioners, for general practitioners to have more time and resources to incorporate them into their daily work and for more research to understand the power dynamics involved. We need leadership in our discipline, and partnership working with policymakers, patient and community organisations, to progress these issues and enable us to optimise benefits for general practitioners, patients and the broader practice population.

Implementing community participation via interdisciplinary teams in primary care: An Irish case study in practice.

BACKGROUND: Community participation in primary care is enshrined in international and Irish health policy. However, there is a lack of evidence about how stakeholders work collectively to implement community participation within interdisciplinary teams; community perspectives are rarely captured, and a theoretical underpinning for implementation of community participation in primary care is absent. OBJECTIVE: To conduct a theoretically informed, multiperspectival empirical analysis of the implementation of community participation via primary care teams (PCTs) in Ireland. METHODS/DESIGN/PARTICIPANTS: Participatory learning and action (PLA) focus groups and interviews were held with 39 participants across four case study sites within a nationally funded programme designed to enable disadvantaged communities to participate in primary care. Normalization process theory (NPT) informed data generation and analysis of how diverse stakeholder groups worked together to implement community participation via PCTs. RESULTS: The various stakeholders had a shared understanding of the value of community participation on PCTs. Motivations to get involved in this work varied, but were strong overall. Challenges to enacting community participation on PCTs included problems with the functioning of PCTs and a lack of clarity and confidence in the role of community representatives at PCT meetings. Informal appraisals were positive, but formal appraisal was limited. DISCUSSION AND CONCLUSION: The implementation and sustainability of community participation on PCTs in Ireland will be limited unless (i) the functioning of PCTs is strong, (ii) there is increased confidence and clarity on community representatives' roles among all health-care professionals, and (iii) more sophisticated methods for formal appraisal are used.

Public attitudes to the use in research of personal health information from general practitioners' records: a survey of the Irish general public.

INTRODUCTION: Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. METHODS: A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information and factors that influence these. A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. RESULTS: Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. CONCLUSIONS: Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research.