The role of Citizen Reviewers in dementia research

Who are Citizen Reviewers?

“It is amazing to see and participate with such a team of professionals all bringing their expertise and ‘know-how’, all focused on the same objective, to cure this disease once and for all!” - Keith Barrett, living with young onset dementia.

Citizen Reviewers are people with lived experience of dementia, including people living with dementia, caregivers, and Alzheimer Society client service staff with an interest in research.

Citizen Reviewers bring a wealth of knowledge to the Alzheimer Society Research Program (ASRP) through evaluating the lay summaries of the research proposals that are submitted to the ASRP for clarity, importance and relevance to their lived experience and in scoring applications they are assigned to help determine which are strongest to move forward for funding.

History

Since 2014, the Alzheimer Society of Canada has included people with lived experience of dementia in the ASRP Peer Review process through the role of the Citizen Reviewer. 

In 2020, the involvement of Citizen Reviewers in the Peer Review process was further formalized, allowing for greater participation, inclusivity, and engagement.

In this role, Citizen Reviewers now serve as equal participants in the Peer Review process, scoring applications, providing valuable contextual feedback, and participating in the ASRP Peer Review panel meetings.

Over the past two years, over 40 Citizen Reviewers have participated in the ASRP Peer Review Process.

Why Citizen Reviewers are so important

1. The Citizen Reviewer role has created a new way to improve the inclusivity of those with lived experience within the evaluation of research proposals. 
2. Citizen Reviewers also ensure that the research the Alzheimer Society funds through the ASRP is not only relevant, but meaningful to those it impacts.
3. Citizen Reviewers give a voice to people with lived experience of dementia in determining funding and prioritizing the value of real-life experience within the dementia research space.

Below, hear from Roger Marple – an advocate for dementia care, research and awareness and a person living with young onset Alzheimer's – about his role as a Citizen Reviewer for the Alzheimer Society.

Training and engagement  

All individuals who participate as Citizen Reviewers receive rigorous training and orientation. 

This training includes semi-structured interviews, a comprehensive orientation package, an interactive orientation session and technical support meetings.

Support also includes being partnered with a Citizen Reviewer Mentor. Mentors are individuals who have served as Citizen Reviewers in the past, who provide additional guidance around evaluating lay summaries and participating in the Peer Review Panel meetings.

This role ensures that new Citizen Reviewers are not only receiving training from Alzheimer Society of Canada staff but are learning directly from PWLE who have gone through the process themselves. 

Why participate as a Citizen Reviewer? 

Participating as a Citizen Reviewer provides you the opportunity to:

• Interact with leading dementia researchers and comment and score on applications that are received within the National Research Program according to your area of interest – either biomedical and discovery research or quality of life and care research,
• Influence the direction of research in Canada to ensure it is relevant and meeting the needs of people living with dementia and their caregivers,
• Meet and network with other individuals living with dementia and their caregivers,
• Return and serve as a Citizen Reviewer or mentor in the future and
• Provide feedback on the Citizen Reviewer role and assist in the modification of the role to ensure it is meeting the need of all those involved.

“Serving on the Citizen Reviewer panel has offered me the opportunity to provide insight from my own experience, as well as an opportunity to give back to the dementia community and be a part of future progress in prevention, and supporting and treating those living with dementia and their care partners… The process was easy to follow with plenty of engagement and support. It was a pleasure to hear so many perspectives on the projects being discussed.” - Krista Schneider, client service staff & care partner.