Summer 2022- Patient and public involvement newsletter
This edition includes a PPI contributor’s experience of shaping lab-based research, an opportunity to shape our research magazine and the return of Parkinson’s UK’s Volunteer Awards.
Shaping lab-based research on a new drug
Rachel Hughes from the University of Sheffield is investigating how a novel drug is having an effect in a specific type of brain cell and if this could be a potential treatment for Parkinson’s. It is a lab-based research project (by this we mean a research study that does not have people taking part).
Rachel wanted to hear people from the Parkinson’s community’s opinions on her research idea and the use of different models (eg cells and animals) to study Parkinson’s.
PPI contributor Nicola Cooper shares her experience of joining two focus groups to help shape Rachel’s project. Nicola also shares her advice for both researchers and people affected by Parkinson’s who are thinking about planning or being involved in lab based research. Click the link below to read more:
Catch up on past research events
Did you know that you can catch up on recordings of past research events on our website? The last few months have seen a number of online events covering a range of research topics from ‘technological advances in diagnosis, treatment and symptom monitoring’ to ‘Improving mental health and well-being in Parkinson’s.
Many of the research events have been organised and hosted by Parkinson’s Research Interest Groups from around the UK. The recordings are available and free for anyone to watch- you can find a selection of recordings as well as information about upcoming events at the link below.
Join our research magazine editorial board!
Progress is our research magazine, designed to inform and engage the reader with the latest Parkinson’s research. The Progress Editorial Board helps decide the content and review the copy and design for each magazine issue. The board is made up of members of the Parkinson’s community and staff from the Research Communications Team at Parkinson’s UK- and is currently looking for 2 new members!
This is a home- based role with meetings taking place via video conference. The team are looking for volunteers who would be willing to be involved with 3 issues of the magazine over a 2 year period.
So if you have a passion for communicating about Parkinson’s research and are interested in this role, we’d love to hear from you! Find out more, including how to apply, here.
Shaping research grant applications
Since the start of the year researchers have been submitting research applications to Parkinson’s UK grant rounds, including the Project grant and Non-drug approaches funding rounds.
Many of you have been working with researchers to help shape their applications prior to submission, including:
- helping to ensure that the plain English summaries are as clear as possible for the Lay Grant Reviewers- people affected by Parkinson’s who help to decide which projects should be funded.
- discussing the research idea and sharing your thoughts on if it is an important topic for the Parkinson’s community.
- providing feedback on the study design.
We wanted to share some of the feedback that we have received from researchers on the support that they received from you and the impact it had on their applications:
The feedback provided on the abstract was very constructive. In particular, they helped me identify parts of the abstract which required additional information [and] jargon to avoid or to explain. Research grant applicant
I find [involving people affected by Parkinson’s] useful and essential to preparing applications. Their ideas and opinions have enriched the proposal. Research grant applicant.
The PPI process has been excellent and we have all been blown away by the quality and depth of responses provided by the panel. They have been truly brilliant. Research grant applicant.
After being submitted, research applications are reviewed by scientific experts and Lay Grant Reviewers and decisions are made on which applications to fund.
We’ll update you in future newsletters about the successful applications.
Volunteers Week- thank you!
1–7 of June saw us celebrate Volunteer’s week and the contribution of volunteers across the charity. If you’d like to relive some of the celebrations and hear the experiences of some fellow volunteers, the ‘Volunteers Week Volunteer Call’ is available to watch on Assemble now- log in here to watch the call.
We would like to say a huge thank you to you all for everything that you do in your patient and public involvement volunteer roles with Parkinson’s UK. We are so grateful for the energy, time and passion that you share to shape and improve Parkinson’s research- thank you!
Volunteer Awards 2022
The Parkinson’s UK volunteer awards are back for 2022! Volunteers are doing amazing things and play a vital role in driving forwards Parkinson’s services, support and research. Launched 4 years ago, the awards are an opportunity to celebrate volunteers who have gone the extra mile for the Parkinson’s community and who champion our values of ‘people-first, uniting, pioneering and driven’. Hear from 4 of last year’s award winners here.
So if you know an individual or a team of volunteers who you’d like to celebrate, nominate them for an award here. Nominations close at 5 pm on 27 July.
Working with pharma to involve the Parkinson’s community in the early stages of drug development
In 2021 we launched a partnership with the pharmaceutical company, UCB, and a charity in the US, the Parkinson’s Foundation, to establish a ‘Patient Engagement Council for Parkinson’s Research’. The council is made up of people from each organisation and 3 people affected by Parkinson’s.
Earlier this year the Council identified a priority area to help involve the Parkinson’s community in the very early stages of drug development.
Traditionally, companies develop a “target product profile” for a new drug, outlining target characteristics such as the drug’s safety and effectiveness. There is now an increasing focus on including the value of that drug to the people who might one day take it, something known as the target patient value profile (TPVP).
The council aims to set out where and how people affected by Parkinson’s should be involved to inform and co-create the development of TPVPs in the future. Find out more about this exciting priority here.
Recently Kate Trenam, from UCB, and Harold De Wit, one of the PPI contributors, spoke at a research lecture about their experiences and hopes for the Council. Hear what they had to say from 39.57 in this recording.
National Co-production Week 2022
And lastly, 4–9 July is National Co-production Week! The National Institute for Health and Care Research (NIHR) describes co-production in research as ‘an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.’
Click here to find out more about the key principles of co-production in this short animation produced and shared by the NIHR on their Twitter page.
Find out more about co-production at Parkinson’s UK here or log in to Assemble to see some great examples that have been shared over Co-production week.
We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Email us at researchinvolvement@parkinsons.org.uk
