In this interview, Lena Sannemann from the University Hospital Cologne shares how Public Involvement (PI) is shaping the development of our digital platform for precision medicine, aimed at improving the diagnosis and treatment of neurodegenerative diseases and co-morbidities. PI involves engaging people affected by dementia and other members of the public in research—not as participants, but as collaborators. This approach focuses on conducting research and developing policies with or by the public, rather than on or for them. Unlike awareness-raising or patient engagement, PI fosters partnerships where researchers and the public collaborate on various aspects of the research process and its outputs.
In PROMINENT, Alzheimer Europe ensures public input through a Public Involvement Board (PIB), composed of people with dementia as well as current and former carers of people with dementia, from different countries in Europe. The PIB provides regular feedback through online and in-person consultations. Their contributions have already enhanced the design, layout, and accessibility of project reports, making them clearer and more useful for the public. Watch the interview: https://vimeo.com/1050801411