Informing equitable noncommunicable disease prevention policies through lived experience: a scoping review of research approaches.

backgroundPeople experiencing marginalisation tend to be systematically excluded from policy decisions. Engaging people with lived experiences of marginalisation is increasingly considered critical for developing equitable and effective noncommunicable disease (NCD) policies. It remains unclear how the voices and experiences of people who are harmed by systems of marginalisation due to gender, ethnicity, sexuality, disability and social position have been included in NCD prevention policies.

methodsWe conducted a systematic scoping review, grounded in constructivist epistemology and critical theory. Five overarching search terms were applied across Medline, Academic Search Complete, CINAHL, and Global Health to describe priority populations, lived experience, participatory research, NCDs and policy. Articles were included if they involved research engaging the lived experiences of local communities and people experiencing marginalisation in high-income countries to inform equitable NCD prevention policies. Factors affecting the inclusion of lived experience were meta-analysed thematically across included studies.

resultsIn total, 49 articles met the eligibility criteria - focused on NCD prevention related to nutrition (35% of studies), NCDs in general (20%), physical activity (12%), tobacco (10%), obesity (10%), mental health (8%) and alcohol (4%). The majority (67%) of research was conducted in the United States, followed by Canada (14%), Australia (6%), Europe (8%), and the United Kingdom (4%). Study participants included Black, Hispanic, and other multicultural communities (52% of studies), people in regional or rural areas (37%), First Nations peoples (22%), residents in low-income areas (28%), people receiving a low income (20%), women only (9%) and people experiencing disability (2%). Studies typically involved policy advocacy to local governments (79%), often supported by local coalitions (22%). Factors underpinning inclusive NCD prevention policymaking included having a strong purpose for engaging with lived experiences of marginalisation, fostering a deep understanding of culturally safe practices, addressing institutional tensions and power imbalances, and co-creating mechanisms for impact (e.g. policy networks and safe spaces).

conclusionsBest practice approaches for including people with lived experiences of marginalisation in NCD prevention policies and research are lacking and should continue to be developed. National-level leadership, genuinely supporting communities, and being aware of one's own role in social change are necessary to improve institutional practices that systemically exclude diverse experiences.