Building a Pathway to Participation: understanding the barriers to health research participation for refugees and asylum seekers - a project report

This consultation programme sought to understand the barriers faced by refugees and asylum to participating in health research, and in parallel, the barriers encountered by health professionals in aiming to engage with these groups. Project activities and proposed solutions were co-designed throughout with people with lived experience. Refugee and asylum seeker involvement in health research is significantly limited by negative experiences of accessing health services together with lack of understanding of the NHS system. These key factors are exacerbated by experiences of trauma, little trust in the state and authority figures, difficult asylum processes and scarce community / peer support. Our findings revealed that refugees and asylum seekers are disadvantaged in multiple respects which feed into the absence of opportunity and capacity to engage with health research. The ability of health and social care professionals to engage with refugee and asylum seekers effectively is curtailed by their view that they do not possess sufficient understanding of these populations, that there is limited opportunity for long-term relationships with support organisations, concerns over gaining informed consent and lack of appropriate support for research participants. Despite the widespread desire to include refugees and asylum seekers in health research, the barriers encountered are such that the logistical and practical issues described by health professionals have so far been significant obstacles to their inclusion. This work highlights the complex nature of the barriers to involving refugees and asylum seekers in health research. Collective dialogue facilitated as part of this process between researchers and refugees and asylum seekers has identified workable solutions to positively tackle the identified barriers. The co-designed solutions and recommendations for future action aim to ensure that this hitherto marginalised group within health research will have future opportunities for meaningful engagement and active participation.