Alzheimer Europe Public Involvement Pool
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What is Public Involvement?
Public Involvement (PI) is about involving people with dementia in the research process, but not as participants. It is about carrying out research and developing policies with or by members of the public and patients rather than on or for them. PI is not about merely raising awareness or providing information about ongoing or completed research (sometimes referred to as patient engagement) or about being a research participant. Rather, it is about creating a partnership between researchers and the public/patients, whereby all contribute collaboratively in varying degrees towards the research process or the research output.
PI is based on the right of people living with dementia to voice their needs and perspectives and to democratic processes such as legitimisation and transparency. It is also a means to an end in that it enables researchers to benefit from the lived experience and perspectives of people with dementia, thereby fulfilling the criteria for good and hence ethical research
There is not one ‘right’ way to do PI and there is not a specific method but an approach to involving people in research other than as research participants which responds to the needs, possibilities and interests of a diverse set of people with dementia.
The nature and extent of the involvement may differ from one research project to the next and can occur along a continuum (e.g. from involvement in an isolated task, through involvement at several or all stages of the research process).
PI activities should be planned, incorporated into the study design, budgeted for, documented and monitored. It should always be meaningful, rigorous and enhance the research process. It should never amount to tokenism or ‘box ticking’ (i.e. either not using their input or involving them in an activity that is not needed simply to be able to claim that they were involved).
Researchers should take all necessary measures to ensure the safety and well-being of people with dementia who are contributing towards PI. However, they should avoid being over-protective/paternalistic and be willing to challenge stereotypes about dementia which may hamper this kind of involvement.
Public Involvement work developed by Alzheimer Europe
Alzheimer Europe is keen to promote the involvement of people with dementia in research, in the context of Public Involvement (PI). Some examples of the work carried out by Alzheimer Europe in the context of PI include:
Alzheimer Europe is conducting PI activities in many European projects where the organisation is involved. This work includes members of the European Working Group of People with Dementia (EWGPWD) and sometimes their supporters. Examples of projects where PI work with members of the EWGPWD has been conducted are ROADMAP, EPAD, INDUCT, DISTINCT, AD Detect and Prevent, Virtual Brain Cloud, Span+, NEURONET, MIRIADE, AI-MIND and ADIS.
Alzheimer Europe has set up and organised a number of project-specific Advisory Boards involving people with dementia and people with Mild Cognitive Impairment or who are at a higher risk of developing dementia:
Resources
- PI work involving people with dementia
- PI work involving people with and at a higher risk of dementia:
- RADAR-AD Patient Advisory Board
- EU-FINGERS (interviews)
- LETHE Patient Advisory Board
- Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)
- Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia
- Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project
- Selecting Remote Measurement Technologies to Optimize Assessment of Function in Early Alzheimer's Disease: A Case Study
- Wearable Devices for Assessing Function in Alzheimer’s Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers
- 2019 Alzheimer Europe Report: Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research | Alzheimer Europe (alzheimer-europe.org)