ACCESS D v1.0
Research type
Research Study
Full title
Advancing community collaboration and engagement strategies in dementia.
IRAS ID
349547
Contact name
Christopher Kipps
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 4 days
Research summary
Dementia affects nearly one million people in the UK, with prevalence expected to rise significantly. Despite the scale and urgency, dementia research continues to face major barriers, including low overall participation and stark inequalities in who takes part. People from lower-income backgrounds, ethnic minority communities, and those with limited access to healthcare or lower health literacy often face multiple barriers to research participation, such as mistrust, stigma, limited awareness, perceived intrusiveness of procedures, and research conducted in unfamiliar or inaccessible settings.
As a result, dementia studies often remain unrepresentative of the populations most affected. This limits the generalisability of findings, slows progress, and risks exacerbating health inequalities.
ACCESS D is a co-produced study designed to address these issues by offering accessible, supported and meaningful opportunities to engage in dementia research within familiar community settings. The study also explores what encourages or prevents participation among different groups, recognising that many people are motivated to contribute to research but may not have previously felt confident, informed, or included.
The study is delivered through culturally tailored community events, co-designed with academic researchers, research paramedics, public contributors, and people with lived experience, and led by research paramedics from the South-Central Ambulance Service.
Participants are invited to try a novel digital memory assessment, a short questionnaire about their memory, or optionally provide a fingerprick blood sample. These tests, although promising, need further testing but may in the future allow people to monitor their own brain health at home. Participants can be supported in-person by research paramedics at events or activities can be accessed remotely via a QR code.
By shifting power and place, from hospital-led pathways to participant-centred, community first research, ACCESS D lays the foundations for a more inclusive, equitable and sustainable approach to dementia research delivery and one that could be adapted across multiple conditions and regions.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
25/NW/0183
Date of REC Opinion
27 Jun 2025
REC opinion
Unfavourable Opinion