Patient & Public Involvement
Public Involvement is described as “carrying out research ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them”. It means active and meaningful contribution of people with an interest in brain health, who provide advice to the EU-FINGERS research team: for instance, their opinions, experiences, suggestions. This is different from being a participant in a research study.
Prevention and risk reduction of Alzheimer´s disease and dementia is a relatively new research area, which is rapidly growing. This research field can greatly benefit from input from the general public, and people with an interest on the topic and/or experiencing cognitive problems or early-stage dementia (e.g. people with Mild Cognitive Impairment, subjective memory decline or early-stage Alzheimer’s dementia). They can bring a unique perspective, and actively and meaningfully contribute towards several aspects of this research. Public involvement can help EU-FINGERS to succeed in finding effective and feasible ways to reduce the likelihood of developing Alzheimer´s disease and dementia.
In EU-FINGERS, Public Involvement activities are conducted through the Advisory Board, which is composed by people from the general public.
The Advisory Board provides advice and recommendations on the different activities conducted within the EU-FINGERS Consortium. This helps to ensure that the voices of different people from the public, with an interest in the topics addressed in the project, are heard, and taken into account.
To learn more about Public Involvement in dementia research please visit:
- Alzheimer Europe’s position on involving people with dementia in research through PPI
- Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia
- Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research
The project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu: Finland, Academy of Finland; Germany, Federal Ministry of Education and Research; Hungary, National Research, Development and Innovation Office; Luxemburg, National Research Fund; The Netherlands, Netherlands Organisation for Health Research and Development; Spain, National Institute of Health Carlos III; Sweden, Swedish Research Council.