Collaborators

University of Southampton; University Hospital Southampton NHS Foundation Trust; South Central Ambulance Service; University of Sheffield

Project team

Patricia Fuller, Andy Claxton, Helen Pocock, Nicola Claxton, Amanda Wollam, Daniel Blackburn, George Devitt, Sarah Fearn, Chris Kipps

Start date

14 July 2025

End date

30 September 2026

Project summary

Many people are interested in taking part in dementia research but do not know how to get involved, are unsure what participation would involve, or do not feel that research is for people like them. As a result, studies often struggle to recruit enough participants, and those who take part may not reflect the wider population.

ACCESS D developed and tested a community-based model to make dementia research more visible, accessible and easier to take part in. Instead of expecting people to come into clinical or university settings, ACCESS D brought research opportunities into familiar community venues, with real-time support from South Central Ambulance Service research paramedics and nurses.

The model was shaped through co-production workshops with public contributors and community stakeholders. These helped define the format, language and support needed to make research feel relevant and closer to people’s everyday lives.

Early findings show that 71% of participants had not previously heard about research, 68% were interested in hearing about future dementia research opportunities, and 91% reported a positive experience of taking part. A quarter of participants were from ethnic minority backgrounds. This suggests substantial hidden interest in dementia research, including among groups often under-represented in research, and demonstrates that access and support are critical.

ACCESS D shows that recruitment is better understood as a supported pathway from awareness to participation, rather than a single step. It also connects dementia research with wider questions about healthy communities, prevention, long-term conditions, digital inclusion, and the use of real-world participation data to understand who is reached, who is missed, and what support enables people to take part.

What have we done with our new knowledge?

The findings from ACCESS D are already being used to inform practice, support wider dissemination, and contribute to adoption and system learning.

ACCESS D demonstrates that community-based, supported approaches can reach people who are not engaged through traditional routes. This helps research feel more visible, understandable and relevant, particularly for groups currently under-represented in dementia research.

The work also shows that recruitment efficiency is not only about identifying eligible participants. It is also about creating the conditions in which participation feels possible. This has implications for how research pathways are designed, especially where studies struggle to recruit to time and target.

The findings are supporting the development of community-based approaches to research delivery beyond conventional clinical settings. This includes exploring how trusted, community-facing services, such as ambulance teams and other outreach teams, could widen access, build research readiness closer to home, and generate practical learning about participation across different communities.

ACCESS D is also generating useful pathway intelligence: who is reached, who progresses, where uncertainty or drop-off occurs, and what forms of support help people move from interest to participation. This has relevance for data-informed approaches to improving research access, inclusion and delivery.

Supported by Public Engagement with Research funding from the University of Southampton, the project is also contributing to practical tools for wider adoption. These include co-produced visual materials to help diverse participants see themselves reflected in research, and a toolkit to help research teams design more inclusive and supported approaches to dementia research participation.

Finally, the work is being disseminated through academic and practice-focused channels. The study protocol has been published as a preprint and submitted for peer review, helping to make the model visible to wider research, delivery and implementation audiences.

What next?

ACCESS D has demonstrated early feasibility and is now moving towards wider implementation and further testing.

The next phase will aim to deliver the model across a broader range of teams, settings and communities, and examine its impact on progression into dementia research opportunities. A key question is whether this approach can improve recruitment to time and target in NIHR portfolio studies by supporting and reaching people earlier, reducing uncertainty and reducing avoidable drop-out.

Alongside this, ACCESS D will produce co-produced visual resources, a practical toolkit and a training approach to support wider adoption. These outputs will help move the work from a single feasibility study towards a transferable model that can be used and adapted by other teams.

ACCESS D has been designed to support future scalability and transferability across teams and settings. It uses existing trusted workforce roles, adaptable community settings and low-burden research activities with integrated co-production, allowing it to be implemented in different contexts while retaining its core principles. This gives it potential relevance beyond dementia, particularly in areas where research participation is limited by access barriers, uncertainty or lack of visible routes into research.

Longer term, ACCESS D has the potential to contribute to a more inclusive and efficient model of community-based research delivery. It aligns with national priorities around healthy communities, prevention, long-term conditions, digital inclusion, research inclusion, decentralised delivery, improved recruitment performance, and applied research that can move from local need to wider adoption.