Patient and public involvement (PPI) newsletter — Spring 2019

In this edition, find out what volunteers told us in a recent survey and learn about an exciting new project we are working on.

Annie Amjad
May 14, 2019 · 4 min read

Results of the PPI volunteer survey

In January, we shared a survey with you so that we could hear your thoughts on the PPI volunteer role and get some ideas for how we could support you better. We were particularly interested to hear your suggestions about volunteer training, as this is something we’ll be focusing on later in the year.

A big thank you to the 68 of you that filled in the survey! We have summarised some of the results below.

85% of those that responded said they felt the PPI volunteer training fully prepared them for their role, which is great to hear! There were also some constructive comments raised, such as:

“It fully prepared me to begin the role. However, ongoing self-check-ups would be useful as sometimes there is a gap between bursts of activity.”

“I would like more feedback on how I am doing, so that I know that I am giving the right kind/amount of feedback.”

A recurring theme in the comments was that it would be useful to have some refresher training. We think this is a great idea — we are going to work on putting together a video module and activity that captures the key themes of the first three home-based training modules.

Another suggestion that came up a few times was that it’d be useful to learn more about how others experience Parkinson’s, to help gain a wider perspective to bring to discussions with researchers.

“I think it would be extremely beneficial for all PPI volunteers to get together with people who have taken an active role [as participants in research]. This would give them the opportunity to experience, albeit second hand, what it is really like.”

“If you have no personal experience of a therapy, it is difficult to speak with any authority. (eg: if you have difficulty swallowing, you might find a large pill almost impossible to take, but if swallowing is not one of your difficulties you might not know this — or it might not occur to you — to mention it.)”

Most people who responded said they were happy with the frequency and format of email opportunities. Quite a few people expressed that they’d like to receive more opportunities. We will continue to spread the PPI message far and wide to encourage more researchers to involve people affected by Parkinson’s in their work!

Patient and public involvement in pre-clinical research

The benefits of involving people in clinical research are well established in the research world. But how can patients and the public be involved in pre-clinical research?

We’re working on a project to test different ways of implementing PPI into pre-clinical research projects. Before starting, we conducted a survey to get an understanding of what researchers and PPI volunteers believe are the challenges and benefits of involving people in lab-based research.

Read our blog to find out more about the survey results and our work in this area:

Grants updates

  • This year we changed the structure of our project grants funding round to include a pre-proposal stage. The deadline for applicants to submit a pre-proposal was at the end of March. Out of the 34 applications we received, 20 have been invited to submit a full proposal. Many volunteers are currently working with researchers to improve their plain English summaries for their full applications, before the final deadline at the end of May.
  • We recently awarded a fellowship grant, in partnership with the Scottish Governments Chief Scientist’s Office, to Julie Jones at the Robert Gordon University in Aberdeen. Julie’s study will focus on testing an intervention called PDConnect, which includes specialist NHS physiotherapy, community based group exercise classes and supported self-management. Watch the below video to hear more about the study.

Role development

The Parkinson’s UK volunteer induction is written by volunteers for volunteers. The modules feature quizzes, videos and various scenarios to help support you in your volunteering role.

Please take a look at the induction modules and let us know when you’ve completed them by emailing

If you have any feedback on this newsletter, or suggestions for what you’d like to see in future editions, please let us know! Email us at

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

Annie Amjad

Written by

Research Involvement @ParkinsonsUK

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

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