Our Alzheimer’s Association Academy meetings are informative, capacity-building workshops for our member associations, which deal with a variety of topics on dementia policy, health and social care, research, and more. On December 12, we addressed the topic of Public Involvement (PI) in dementia research, hearing how PI has helped shape, inform and improve European projects on digital biomarkers, brain health, and technical support tools.
PI is about involving the public in the research process, so that research is done “with” or “by” the public, not “for” or “about” them. PI can improve health research by enabling it to meet the needs and values of the ultimate beneficiaries of this research: people living with a health condition, and the general public. Alzheimer Europe is keen to promote the involvement of people with dementia in research, and includes members of our European Working Group of People with Dementia (EWGPWD) in PI activities for a number of EU-funded research projects.
In the December 12 Academy meeting, we heard from three researchers working on different dementia research projects, who shared their experiences, learnings and good practices from PI work in RADAR-AD (Remote Assessment of Disease and Relapse – Alzheimer’s Disease), EU-Fingers and Lethe, and DISTINCT (Dementia: Intersectional Technology for Training and Innovative Network for Current Technology). Moderated by Dianne Gove, our Director for Projects, the Academy meeting was opened by the current Chair of the EWGPWD, Chris Roberts.
In his welcome address, Chris, who was diagnosed with mixed dementia in 2012, shared his positive experiences of PI, which were mutually beneficial for researchers and for people with dementia. Chris handed over to Casper de Boer (Alzheimer Research Centre, VUmc, the Netherlands), who described the PI activities in RADAR-AD. He explained how the RADAR-AD Patient Advisory Board has provided valuable – and sometimes unexpected! – insights on the selection of remote monitoring technologies, clinical trial processes, and the statistical analysis plan for the project. Next up, Anna Rosenberg (Karolinska Institute, Sweden and Finnish Institute for Health and Welfare, Finland) shared her experiences from involving people with and without cognitive problems in two large, European projects on brain health: EU-Fingers, and Lethe. Explaining that the PI work was fun, meaningful and useful, she talked about how the two Advisory Boards have addressed issues such as the relevance of prevention research, trial design, and communication of dementia risk.
The final speaker of the Academy meeting was Simone Felding (DZNE, Germany), who spoke about PI activities in the DISTINCT project. Simone is completing her PhD on the acceptance and adoption of social robots into everyday life for people with dementia, and explained how PI has helped improve her research methodologies and communications. She highlighted the importance of considering and embedding PI early in the research process, even at the proposal development stages – an opinion that was shared by Casper and Anna, also.
Many thanks to all presenters and participants for lively discussions and engagement with the topic of PI! We look forward to welcoming our members to Academy meetings in the new year.