Participant Engagement & Experience

The Participant Engagement & Experience Workstream aims to develop a coordinated, patient-centred framework to enhance recruitment, diversity, and engagement in dementia trials through community outreach, partnerships, and streamlined processes.

Vision

To embed a strong Patient and Public Involvement and Engagement (PPIE) approach across UKDTN, enabling people affected by dementia to participate in research more easily and to have a positive, supported experience before, during and after clinical trial involvement.

Objectives

Support participants and study partners throughout the entire research journey
Champion inclusive, accessible and culturally sensitive research to increase participation from diverse and underserved communities
Improve the experience of people considering, taking part in and completing clinical trials
Equip clinicians and researchers with the skills and insight needed to deliver equitable, participant-centred research

Strategic Focus Areas

Coordinated national and local peer support groups for trial participants
Community engagement activities with UKDTN sites, charities and local organisations
Development of a participant experience charter and evidence gathering on trial experience
“Cascaders” programme to share research stories through faith, community and professional networks
Sharing learning on screen failures and modifiable barriers to participation
Exploration of capacity building through a Health Equity Scholars programme
Development of national guidance on approaching, recruiting and supporting people affected by dementia in early-phase clinical trials

Enablers

Partnerships with experts by experience
Collaboration with UKDTN sites and PPIE leads
Close working with industry partners
Alzheimer’s Society UKDTN Research Nurses and the national dementia advisor network
Rare Dementia Support regional network hubs
Local community champions and organisations
Collaboration with ADNI’s community-engaged research (CI-CER) team

Information for patients: https://www.alzheimers.org.uk/get-support/dementia-support-services

“A community-embedded patient trials network, providing tailored support to individuals”

Embedded Patient Support Network

UKDTN established an embedded patient support network that builds local hubs to ensure trials are accessible and patient-centered. Every site contract includes a Patient Charter, reinforcing our commitment to transparency, respect, and engagement. The Alzheimer’s Society UKDTN research nurses network provides dedicated support, helping patients navigate trial participation and ensuring continuity of care.

Alzheimer’s Society UKDTN Research Nurses

The research nurse programme represents a strategic £3 million investment over three years and is delivered through a partnership between the UKDTN and Alzheimer’s Society. The programme creates and strengthens vital connections between Alzheimer’s Society services, UKDTN sites and existing dementia research infrastructure to enhance support for participants, facilitate referrals and promote shared learning. Working locally and nationally, research nurses widen access to studies, raise awareness of research opportunities and help more people living with dementia take part in clinical trials. A core focus of the programme is to broaden diversity among trial participants and to provide bespoke, patient-centred support that improves the experience of both participants and their study partners throughout the research journey.

Putting patients at the heart of trials

Community Engagement Network

The UK is home to exceptional expertise, experience and best practice in community engagement. The UKDTN’s Participant Engagement & Experience Workstream has been established to facilitate collaboration, shared learning and mutual support among individuals and groups delivering community engagement activities at UKDTN sites.

Chaired by Dr. Natalie Marchant alongside a rotating co-chair, the Community Engagement Network meets monthly online and annually in person. These meetings provide a platform to showcase innovative initiatives, share practical tools and resources, and hear from speakers representing different sites and diverse communities.

UKDTN Alzheimer’s Society Survey

A joint survey by the Alzheimer’s Society and UKDTN gathered responses from over 1,200 people living with dementia and those who care for them, capturing their experiences around being approached to discuss, and participating in dementia research. The data will serve as a baseline for evaluating the impact of UKDTN interventions and will be shared later this year. Initial findings show strong interest in research and clinical trials: 96% believe they are an important part of improving lives for people affected by dementia, and 90% want discussions about research opportunities to be a part of standard dementia care. However, few received information, and even fewer participated in clinical trials. These insights are now guiding improvements in participant experience and help shape future priorities.

Enhancing Access and Inclusivity

UKDTN is committed to making dementia trials inclusive and representative. Our forthcoming AAIC white paper sets actionable priorities for improving access, while patient feedback drives continuous improvement. For example, our UKDTN Alzheimer’s Society patient survey has been adopted for pivotal phase III trials (Trontier 1 & 2) to capture real-world experiences. We also collaborate with Alzheimer Europe and conduct qualitative deep-dive studies to better understand barriers and opportunities for participation.

Diversity Learning Across the Network

Diversity is essential for meaningful research outcomes. UKDTN promotes cultural inclusivity through initiatives such as the UCL/Sheffield Chinese exchange, development of culture-neutral outcome measures, and provision of interpreter support. These efforts ensure that trials reflect the diversity of the UK population and deliver results that are relevant and equitable.