The role of citizen reviewers in dementia research

Who are citizen reviewers?

“We remember their love when they can no longer remember. It is with this love that I take action, putting forth my insights from lived experience towards the advancement of research to cure Alzheimer’s Disease now…so our next generation won’t have to. Caring about one another represents our greatest value. So, join me as a citizen reviewer and let’s work together.” -Kori Miskucza

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). After research proposals are submitted to the ASRP, Citizen Reviewers evaluate the proposal lay summaries for clarity, importance, and relevance to their lived experience.

History

Beginning in 2014, the Alzheimer Society of Canada has included people with lived experience of dementia in the Alzheimer Society Research Program 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.

Since then, more than 40 citizen reviewers have participated in the Alzheimer Society Research Program 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 – who was 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. Roger spoke on this topic in early 2022 as part of a World Health Organization dementia blueprint presentation.

Training and engagement  

All individuals who participate as citizen reviewers receive 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 also are learning directly from people with lived expertise who have gone through the process themselves. 

Why become a citizen reviewer? 

Being a citizen reviewer provides you the opportunity to:

• Interact with leading dementia researchers and comment and score on applications that are received within our 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 
• 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.