Public Involvement

What is Public Involvement in research? 

Public Involvement (PI) is the process of involving members of the public (e.g., people living with the condition, their family, carers/ supporters and the general public) to varying degrees in research. This way of conducting research should be meaningful, timely and active. PI does not consist in taking part in a research study or receiving information about it, but rather in the active involvement of people in research projects and research organisations other than as research participants.

Why is Public Involvement important? 

PI is based on the right of people living with a condition to have a say in the research that directly affects them. People with Alzheimer’s disease (AD) can actively and meaningfully contribute towards several aspects of the research process by bringing their lived experiences, perspectives and priorities, from which researchers can benefit as well.

How do we involve members of the public in ADIS research? 

ADIS has set up an Advisory Board (AB) to involve people with Mild Cognitive Impairment (MCI) due to AD and people with dementia due to AD or to other causes in a timely and meaningful manner.

PI activities are coordinated by Alzheimer Europe, in partnership with researchers leading the different areas of work in the project.

If you want to learn more about PI in dementia research, please have a look at Alzheimer Europe’s position paper on this topic.

ADIS advisory board

The AB is composed of people with MCI due to AD or dementia due to AD or to other causes.

1. Why is the advisory board important? 
   ADIS is looking at the link among alterations in the sleep-wake cycle (e.g., night wandering), in the immune system (i.e., body’s defense mechanism) and the early development of AD aiming at an earlier diagnosis of this disease. It is, therefore, important that the perspectives, expectations, priorities and concerns of people with AD and the general public with an interest in the topic are addressed and taken into account from the beginning of the project and along its designing process (i.e., study protocol design, participants-faced materials, informed consent and tolerability of the diagnostic tests, among others).

   The ADIS-AB will address the ethical and social implications of the project. It will also provide feedback on study protocols and materials, ensuring that the voices of different people from the public are heard and taken into account throughout the research process.

   Alzheimer Europe is leading the work of the AB in collaboration with the relevant project partners leading the different areas of work in the project.

2. How was the advisory board set up and how does it work?
   The ADIS-AB has been set up in late 2022 and is composed of people with MCI due to AD or dementia due to AD or to other causes. It includes people that are either:
   • members of the European Working Group of People with Dementia (EWGPWD),
   • members of other advisory boards contacted by the Confederación Española de Alzheimer,
   • people contacted by ADIS researchers through the Clínic Foundation for Biomedical Research (Barcelona, Spain).

    

   Informative meetings were organised with everyone who expressed their interest in joining the ADIS-AB. After the meetings, some of them expressed a special interest in the topic and agreed to become members of the ADIS-AB.

   Members of the ADIS-AB do not need to have any previous scientific, technical, or specialised knowledge. The working languages of the ADIS-AB are Spanish and English. During the activities carried out with the AB, members can be supported by a family member, a friend, carer/ supporter or a member of the ADIS local team whenever needed.

   The ADIS-AB will be involved in several ADIS activities from the beginning of the project, and where PI may be relevant or useful. The members of the AB will provide input, collected through face-to-face consultations, email, videoconference, and telephone calls, about relevant issues for the project. The feedback from the consultations will be reported and the members of the ADIS-AB will also know the impact of their input.

   In addition to the ADIS-AB, AE set up a new working group in early 2024. This new group, named ADIS Young Adults Advisory Board (ADIS YA-AB), is composed of 9 young adults who are currently studying Medicine or a Master of Neuroscience. The ADIS YA-AB will help AE shape a brain health campaign for young adults in their 20s.