How is Public Involvement organised in PREDICTOM?

Public Involvement areas

PREDICTOM’s PI work is assumed in different areas. These areas are the following:

European Involvement Groups

• Public Ambassadors Group (PAG)

• Public Involvement Pool (PIP)

National working group(s)

• WiseAge (Norway)

• Consejo de Oro (Spain)

The meetings of the PAG are organised and supported by staff from Alzheimer Europe with extensive experience in Public Involvement. The national working group meetings are planned together with Alzheimer Europe but organised and supported by the national coordinators.

The Public Ambassador Group (PAG) 

The Public Ambassador Group is composed of people with subjective cognitive decline (SCD), people at higher risk of developing dementia and people with no cognitive decline but who provide support/care to people living with dementia (e.g. family members, partners and friends).

All of the Ambassadors have a keen interest in brain health and promoting dementia research.

Meet the Ambassadors in PAG 🡪

The Public Involvement Pool (PIP)

In 2023, Alzheimer Europe set up the Public Involvement Pool (PIP), which is an online group of members of the general public living in Europe.

The PIP is not exclusive to the PREDICTOM study but is a continuously growing group of people from all walks of life with a keen interest in dementia research, and/or people with dementia, at risk of dementia, with Mild Cognitive Impairment and carers of people with dementia.

Health and social care professionals, service providers and students are excluded from the pool. Similar to the PAG, the members of the PIP are involved in online or in-person consultations, focus groups, written discussions and brief surveys for various European research initiatives.

Interested in journing the PI pool? If you would like to be involved or to learn more about the PIP, you are welcome to sign up using this link.

The national working groups

The national working groups operate alongside the European group, offering valuable perspectives on issues that are specifically significant at the national level.

The involvement/consultations of the national groups do not differ from the functioning of the European group. As with the European group, regular online and occasional face-to-face meetings are organised for the members to provide feedback and elaborate on selected topics and materials.

WiseAge (Norway)

SESAM (Centre for Age-Related Medicine, Stavanger University Hospital, Norway) established WiseAge in 2015 as a platform for recruitment of user involvement in research and dissemination of research results to the society. All research projects at SESAM must have a user representative. WiseAge has about 80 members, with a minimum age of 60 years, with vast experiences and knowledge.

SESAM has a structure that supports user involvement in research, among others a research school for user representatives and a handbook “SESAM’s guide to user involvement in research.” The user representatives are appointed by WiseAge.

The user involvement group in PREDICTOM has five members, all coming from WiseAge.

Meet the Ambassadors in WiseAge 🡪

In 2024, the national working group in Valencia, Spain was specifically set up to contribute to the Public Involvement work on a national level in PREDICTOM. Currently, Consejo de Oro has four members and Laura Ferré González from the La Fe Health Research Institute (IIS LA FE) in Valencia, Spain, is the coordinator of the local working group.

Meet the Ambassadors in Consejo de Oro 🡪