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How experts by experience improve dementia research

John Major, long-standing Research Network volunteer, shares his experience of meeting with one of our generous donors to share the important role the Research Network volunteers play within our research funding programme.

"I had not appreciated the uniqueness of the joint lay and academic project selection."  

That is a direct quotation from a recent conversation I had with someone who is currently funding four PhD projects for the Society. He wanted to know how Research Network Volunteers are involved when the Society is deciding what research proposals to fund, and I was the volunteer who held that conversation. It was a genuine conversation with questions and discussion, and it proved to be very interesting for both of us.  

How the programme works

I first explained the backgrounds of the Research Network. We all share the knowledge of life with dementia – we are all experts by experience. This background is reflected in our approach when we are looking at project research outcomes.

At the lay review stage, every application for funding is not just peer reviewed by academics but also lay reviewed by members of the Research Network. Applications are then shortlisted by the Grant Advisory Panels (one for biomedical and one for care projects) and Grant Advisory Boards, comprised of academics and a few lay members who present the views of the lay panels.

He was amused when I explained that some of the comments from the academics can be rather robust but ultimately a constructive agreement is reached.

Anyone who applies to the Society for research funding but does not receive funding approval can request future guidance and an explanation of any areas of weakness in their project plans. 

As Research Network Volunteers, we are also there when fellowship applicants make a presentation and have an interview with a small joint academic and lay panel.

For me, this is an important opportunity to establish the applicant’s commitment to a future in dementia research. He certainly supported the Society in its support of young dementia researchers and their career development. 

When the Society decides to fund a project, monitors are appointed from among the Research Network Volunteers. They will follow the project alongside the research team as it progresses. These meetings generally occur every 6-12 months. Traditionally these were 'real', often including a lab visit as we discussed progress.

Recently of course, the meetings have been held virtually but, in the future, I expect we will adopt a hybrid combination of meeting formats. However, there is no doubt in my mind about the value of the interactions we have when we all meet face to face.  

Talking to lay members can be particularly helpful to PhD and Junior Fellowship researchers as it gives them an opportunity to develop their communication skills and practice sharing their findings with a non-academic audience.

We also encourage researchers to participate in public involvement events and attend conferences to present their work.  

The meeting concluded with the statement quoted in my introduction and of course it is absolutely correct. The approach to dementia research as practised by the Society is indeed unique and perhaps now is the time to start saying so. 

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