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Personal and Public Involvement

Reaching out to communities is helping our dementia research

Engaging people and communities is important to DPUK. This includes community-based research and the inclusion of groups, communities or non specialist people in the organisation of our work.

There is a range of activities designed to connect individuals and communities to advance dementia research. Many of our projects build strong relationships with diverse communities, promoting awareness about brain health and actively involving people in dementia research. DPUK events and conferences have achieved significant milestones, making a great impact.

1. Your Beautiful Brain Workshops: Empowering Communities

Black African and Caribbean communities are under-represented in dementia research. Working with the Black Dementia Company we organised art workshops in London, Oxford, Leeds and Sheffield as well as online called 'Your Beautiful Brain'. Led by Professor Sarah Bauermeister, they reached neglected audiences through art activities. Using black artists as facilitators, and working with local community leaders and groups, we explored issues around age-related memory and provided simple art exercises which can help keep people mentally active. Additionally, participants were introduced to our Great Minds volunteer register, opening the path to their participation in research studies.

2. Not Just a Missing Number: Inclusivity for the LGBTQIA+ Community

Recognising the importance of inclusivity, we have been actively engaging with the LGBTQIA+ community in the ‘Not a Missing Number’ project aiming to establish a public engagement group within this community. By involving the community directly, we seek to address these communities' underrepresentation and seek their participation in future dementia research.

3. Community Engagement and Outreach via DPUK registers

The Great Minds register has over 9,000 participants and the Clinical Studies Register has an additional 58,000 individuals who have expressed their willingness to be contacted for dementia-related research opportunities. This remarkable engagement underscores the public's commitment to advancing dementia research. We host live events twice each year which can also be joined online, enabling individuals to learn about the latest developments in brain health research.

In early June 2023, we organised the successful 'Great Minds' event on Environmental Factors for Dementia. With high number of attendances in person and approximately 300 viewers online, the event focused on the influence of environmental factors on cognitive health. These events have been part of the ongoing Great Minds project since 2020,

continues to create awareness about dementia research through its diverse range of informative sessions. In previous years, Great Minds events have focused on topics such as dementia screening and dispelling myths surrounding dementia prevention, and on frontotemporal dementia.

In addition to the Great Minds events, newsletters are sent to the Great Minds membership three times a year, providing updates on recent developments and links to relevant information.

4. Advancing Research through studies

We have opened a new study, FAST: Feasibility and Acceptability of Scalable Tests. Through this study, we are exploring the relation between memory and blood samples, making way for a larger study that will contribute to cognition research. Input from the participants in the FAST study will shape subsequent studies and hence the future of early detection and intervention in dementia.

5. Supporting early career researchers

Furthermore, DPUK supports early career researchers through regular Datathons, which offer a valuable platform for specialists in statistical analysis and machine learning. By utilising DPUK datasets, the researchers can work in teams to further their research and contribute to the understanding of dementia.  Previous Datathons have been addressed by organisations of people living with dementia, such as the Three Nations Working Part. 

Participants who joined Datathons find the event encouraging to devise their own studies swiftly and efficiently in a few days of the event.

6. Public Engagement Opportunities

DPUK is dedicated to involving the public in all aspects of our work. Recognising the importance of public engagement for qualitative research, DPUK emphasises early involvement of the public to demonstrate ethical soundness and public interest. Research Ethics Committees favour proposals that incorporate public engagement.

Two panels have been developed to provide researchers with feedback from members of the public with their planned research:

  • DPUK Data Portal has partnered with SAIL Databank to provide researchers with access to the SAIL Consumer Panel. This collaboration relieves researchers of resource and financial burdens by facilitating direct engagement with the panel.
  • Great Minds Patient and Public Involvement panel has been set up to consider and discuss research studies. This panel comprises member of the public that are on the Great Minds register.

By actively involving the public through initiatives like these panels, DPUK aims to promote transparency, inclusivity, and improved research practices. Public engagement opportunities are integral to DPUK's commitment to advancing dementia research in collaboration with the communities it serves.

 7. Decision making committees

DPUK feels that it is important to have public representation on its decision-making committees. There is public involvement on the following committees:

  • The Register Data Access Committee which meets monthly to review studies that have applied to use the DPUK registers
  • The Commercial Data Access Advisory Board meets to discuss applications from commercial organisations to use data held on the Data Portal

DPUK's commitment to engaging with the public and strengthening collaboration in dementia research has led to many achievements. By actively involving diverse communities, promoting awareness, and organising impactful events, we continue to drive forward progress in understanding dementia and developing effective interventions.