On the occasion of World Alzheimer's Day, 21 September, Alzheimer Europe is focusing on the importance of Public Involvement (PI) in dementia research and would like to invite individuals from the general public who are interested in dementia and brain health to join its new European Public Involvement Pool. The platform allows members of the public (excluding health and social care professionals, students and service providers) to share their views on various research-related topics and projects. Members of the PI Pool will get access to opportunities to participate in consultations, focus groups, written discussions and brief surveys.
What is Public Involvement?
To ensure that research accurately reflects the preferences, needs and priorities of members of the public, their perspectives need to be included in different aspects of research processes and outputs/results. PI has been shown to improve the quality of research. Also, it helps ensure that research is ethical, transparent and reflects the principle of “nothing about us without us”.
What can people expect from joining?
By joining, members of the PI Pool will have the opportunity to provide input on different aspects of ongoing European research initiatives. Examples of topics include new technologies and Artificial Intelligence-based approaches to dementia prevention, screening, diagnosis or management and dementia risk prediction models etc. The main activities will be in English but there will be opportunities for specific activities in other languages (e.g. French, German, Italian or Spanish). In the past, Alzheimer Europe's focus has been on involving people with dementia and carers in research and the organisation is now seeking to broaden its Public Involvement activities to include people who do not have dementia but are interested in the topic, particularly people with no cognitive or memory problems, people who feel concerned about their memory and people with Mild Cognitive Impairment. Alzheimer Europe is also very keen to ensure a diversity of perspectives in its Public Involvement activities by including the perspectives of people from different minority and marginalised groups.
We therefore particularly welcome:
• Older people with no memory or cognitive problems, interested in brain health and dementia research.
• People at higher risk of dementia or with memory or other cognitive problems (e.g. Mild Cognitive Impairment).
• Additionally, we are keen to include the perspectives of members of minority and marginalised groups and cultures (with or without cognitive problems),such as people from minority ethnic groups, the LGBTQ+ community or those living in rural areas or residential care settings.
Find out more here: Alzheimer Europe Public Involvement Pool | Alzheimer Europe (alzheimer-europe.org) or get in touch for more information at: Daphne.lamirel@alzheimer-europe.org or Dianne.gove@alzheimer-europe.org