Protocol for ACCESS D: a mixed-methods feasibility study of a community-based model to improve equity and efficiency in dementia research participation
Fuller, P.; Claxton, A.; Pocock, H.; Williams, S.; Claxton, N.; Wollam, A.; Blackburn, D.; Devitt, G.; Fearn, S.; Kipps, C.
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BackgroundDespite national efforts to improve research inclusion, people from underserved communities remain underrepresented in dementia trials. Barriers occur at the point of initial engagement and also within the participation pathway itself, as the structure and burden of early screening procedures can discourage continuation. ACCESS D (Advancing Community Collaboration and Engagement Strategies in Dementia) aims to address these challenges by testing a community-based model that combines co-produced engagement events, low-burden research activities, and real-time support from the South Central Ambulance Service (SCAS), a trusted, community-visible healthcare workforce. Methods and analysisACCESS D is a 12-month mixed-methods feasibility study recruiting 100 adults aged 50-90 years with either (i) a diagnosis of mild cognitive impairment or dementia or (ii) a self- or proxy-reported memory concern affecting daily life. The study will deliver 12-18 co-produced community outreach events in non-clinical settings, supported by SCAS research paramedics and nurses. Following consent, participants will complete a core questionnaire and may optionally take part in one or more low-burden research activities designed to provide supported, first-hand experience of dementia research. Feasibility outcomes, including pathway progression and opt-in to future dementia research contact, will be descriptively summarised and stratified using NIHR INCLUDE-aligned underserved characteristics. Qualitative interviews and focus groups with participants and staff will examine acceptability, perceived value, barriers and enablers, and implementation learning, analysed using thematic analysis and integrated with quantitative findings. Ethics and disseminationThe study has received a favourable opinion from the Southwest Frenchay Research Ethics Committee and Health Research Authority approval (IRAS 361074). Findings will be disseminated via peer-reviewed publications, conference presentations and co-produced lay outputs for community partners and participants. These outputs will be accompanied by an implementation toolkit for research teams and a visual summary for potential participants. Strengths and limitations of this studyO_LIThis study tests a community based, co-produced delivery model that embeds real research participation within outreach, addressing both awareness and structural barriers to dementia research participation. C_LIO_LIOutreach is delivered by a trusted, community visible healthcare workforce, enabling real time support and reducing psychological, practical and digital barriers for underserved groups. C_LIO_LIThe mixed methods feasibility design combines quantitative indicators of reach, progression and resource use with qualitative insights into participant and staff experience, generating actionable learning for scale up. C_LIO_LIOutcomes are explicitly equity-stratified using NIHR INCLUDE aligned characteristics, allowing early assessment of differential reach and engagement across underserved populations. C_LIO_LIAs a single region feasibility study, findings may have limited immediate generalisability. However, the study is designed to generate transferable implementation insights and inform a future multi-site evaluation. C_LI
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