Abstract
BACKGROUND: The Deaf community experiences health inequalities including higher mortality rates, increased prevalence of chronic conditions, and poorer access to healthcare services compared to the general population. Despite calls for urgent research investment and meaningful community engagement, no research agenda developed by and for the Deaf community exists to address these inequalities. Traditional priority-setting exercises often exclude or dilute the perspectives of underrepresented groups. This study aimed to identify and prioritise research questions to address health inequalities experienced by Deaf British Sign Language (BSL) users in the UK, using Research Prioritisation by Affected Communities (RPAC) methodology to ensure community voices were centred without external filtering. METHODS: A Deaf-led steering group adapted RPAC methodology for BSL accessibility. Two rounds of focus groups were conducted entirely in BSL led by Deaf facilitators. Round one (January 2025) included 43 Deaf BSL users across eight groups who shared experiences of healthcare receipt across seven NHS services. The 294 extracted statements were categorised using a conceptual framework for understanding healthcare disparities in disability, then refined into nine research themes by Deaf public contributors. In round two, 38 participants (87% retention) prioritised themes using a resource allocation exercise where each participant distributed £1 million across themes. Themes were ranked by total allocation. RESULTS: Environmental factors (222 statements) substantially outnumbered individual factors (72 statements) in round one. The highest priority theme was ‘process’ (28% of votes), focusing on enabling direct NHS communication without telephone barriers. ‘Deaf awareness for NHS staff’ ranked second (25%), followed by ‘interpreters’ (17%) and ‘technology’ (13%). Individual-level interventions received minimal prioritisation: ‘Deaf health empowerment’ (1%) and ‘Deaf health champions’ (0.6%). Participants emphasised systemic failures including non-compliance with the Accessible Information Standard and lack of BSL interpretation. CONCLUSIONS: Deaf BSL users prioritised systemic NHS changes over individual interventions, indicating that institutional barriers must be addressed before individual-level approaches can be effective. The emphasis on process improvements and staff awareness training has immediate implications for NHS policy and Accessible Information Standard (AIS) enforcement. These findings should inform research commissioning, with priority given to co-designed interventions addressing communication processes and developing effective Deaf awareness training for healthcare professionals.