Parkinson’s UK have been involving people affected by Parkinson’s in the charity’s research funding decisions for over 15 years.
Over the years, the number of lay grant reviewers has grown to the impressive 104 it is today.
In the past, the role mainly attracted people who were affected personally by Parkinson’s, but who had a scientific or technical background in a range of different areas.
We wanted to change that. We found that the comments our lay grant reviewers were making often focussed on the science of the applications. Every funding application is reviewed by a range of scientific experts, so this is not what we were looking for.
The purpose of our lay grant reviewer volunteer role is to enable people affected by Parkinson’s to use their personal experience of the condition to help us decide which research grant applications to fund. Only people who are living with Parkinson’s can bring this vital knowledge and experience to the funding process.
We want everyone affected by Parkinson’s to feel that they can get involved in the research funded by Parkinson’s UK. There is no need to have any knowledge of science as we make sure that our researchers explain their work in plain English.
We asked some of our lay grant reviewers to share their experiences of the role, and how they feel they have developed over time.
Anne, lay grant reviewer says:
“Becoming a lay grant reviewer was a way for me to use the knowledge I had gained as I cared for Mum, it has also been helpful in my grief journey and enables me to give back to the charity that has supported me.
I thought that I would not be able to pick out the relevant points to comment on from a Grant application. Initially I picked grants carefully, only saying I could look at ones that I had an awareness of, or were not the very ‘scientific, lab-based projects.’
Now, having done quite a few, I realise that it is my first-hand knowledge of the condition (from diagnosis to end-of-life) that is important to share with researchers who have the scientific knowledge but not the lived experience of how it affects those who live with or alongside it”.
Billy, a lay grant reviewer says:
“When I was diagnosed with Parkinson’s my wife suggested that I get involved in research work through Parkinson’s UK .
When faced with my first review I was concerned that my input would not be particularly useful or relevant, but the structure given through the training and the design of the review form helped me complete the task — hopefully successfully. As I have carried out further reviews I feel that I am able to understand the applications more quickly and look for points on which I can constructively comment more readily. The forms ensure that I maintain a consistent approach.
The role makes me feel useful in contributing to the research by using my management skills. Making this contribution to research, which is the only key to long term solutions, enhances my sense of worth in the face of what will become an increasingly debilitating illness”.
Lay grant reviewers help to make sure that people affected by Parkinson’s who take part in research studies have a better experience. Their comments and suggestions for improvements help to make studies more tailored to people with the condition. The comments from our reviewers also help to make sure the research we fund is important and relevant to people affected by Parkinson’s.
The input of our lay grant reviewers also has an enormous impact on researchers. Researchers can improve their research studies to make them more suitable for people affected by Parkinson’s who are taking part. They can also make sure that the research question they are asking is important and relevant to people affected by Parkinson’s.
One researcher said:
“The lay reviewers’ comments were incredibly helpful when redrafting the application. There was an academic argument about whether we should recruit participants via clinical routes and have participants visit our laboratory or else to visit Parkinson’s support groups for data collection. There were many lay comments favouring our original approach which was to visit support groups to study people with Parkinson’s. This enabled us to have the confidence not to change this, and that we were right to move forward using the same recruiting and data collection model in order to limit the inconvenience to people with Parkinson’s. The notion that keeping participant inconvenience to a minimum is important was also corroborated by our own PPI sessions. All in all, we decided that as long as recruitment and data collection could demonstrate the necessary academic rigour, minimising participant inconvenience was a key priority for the study”.
Our lay grant reviewers can make a real difference to Parkinson’s research. And the role is also a great way to challenge yourself, by gaining and developing new skills, confidence and knowledge. We think that undertaking this role can give people a real feel good factor.
Michelle Bendix, senior research grants officer at Parkinson’s UK said:
“The wonderful enthusiasm and commitment of our lay grant reviewers enables us to fund research that is relevant and important to people affected by Parkinson’s. The opinions and understanding of living with Parkinson’s of these essential volunteers provide vital insights to researchers to help them improve the quality of research into the condition.
It is a privilege and a pleasure to work with such a committed and dedicated group of people.”
Want to get involved? Email us at email@example.com