People affected by MND help decide research project funding

Over the past year, people affected by MND have been helping us to decide what research we fund. One way we’ve been doing this is through inviting people affected by MND to be lay grant reviewers.

Lay review is an important part of our peer review process. The process means that when an application is submitted to us for funding, it is reviewed by different people, including researchers and scientists who are working in a relevant field (‘scientific reviewers’), and people affected by MND (‘lay reviewers’). This helps us to know that the research is scientifically rigorous, and that the areas of work we fund make the biggest difference to people affected by MND.

The importance of lay review

Lay reviewers shape our decision making by bringing the perspectives of people affected by MND to research projects. The expertise they have through living with MND themselves, or through loved ones, helps us to make sure the research applications are accessible, relevant, and important to those affected.

“I wasn’t sure whether I’d have anything to contribute, but I’ve enjoyed providing feedback and realising that I do have a lot to share that can be useful. And that the scientists might not know about the disease and living with it every day” – Lay reviewer

“Over the past year, lay review has helped to guide prioritisation of research topics by the Scientific Advisory Panel. I believe this has been a key development to the established scientific review, bringing a new angle to our discussions and a vital influence on our decision making. We are indebted to the lay reviewers who devote their time and experience to this task. The more people affected by MND who are part of this process, the stronger the programme of lay review will become”  – Professor Scott Bryson, MND Scotland Board of Trustees and Co-Chair, Scientific Advisory Panel.

How does lay review fit within our wider funding process

As part of our funding process, researchers who are applying to us are asked to complete a section on their application for lay reviewers. This part of the application is reviewed by two individuals affected by MND. We ask the reviewers to respond to a series of questions, which go to our Scientific Advisory Panel (a group made up of 10 members including researchers, scientists, clinicians and Trustees). The lay reviews are considered alongside the scientific reviews, and the two sets come together to influence the work we fund.

Would you like to help us to shape the work that we fund?

We are currently looking for people affected by MND who are interested in helping us to decide what research we fund, or who want to find out more. Anyone affected by MND – those living with the disease, and those who help or have helped support or care for a loved one with MND – can be a lay reviewer. No scientific knowledge is required, but an interest in finding out about the kind of research that goes on is helpful.

You will not be asked to comment on any of the scientific elements of review, instead you will contribute important and valuable feedback based on your experiences.
If you would like to find out more information or register your interest, please get in touch with Gabrielle on involvement@mndscotland.org.uk or 07593 533054.