Summer 2023 — patient and public involvement (PPI) newsletter
In this edition we introduce a new member of the Research Involvement team, share updates from conferences, bring you opportunities to have your say and more!
Introducing a new member of the Research Involvement Team
We’re really excited to have welcomed Anne Gill as Research Involvement Officer and she’s shared a message for you:
Hi everyone, I hope you are well and are having a lovely summer. I just wanted to introduce myself to you — my name is Anne and I joined the Research Involvement Team on the 14th August . Before joining Parkinson’s UK, I was at Alzheimer’s Research UK where I helped manage the research grant funding process.
I am really excited to be here, and I am looking forward to working with you to put your voices at the forefront of research. I am here to help you, so if there is anything I can do to make things easier for you, then please do just let me know.
New results from a clinical trial for a potential dyskinesia treatment
A clinical trial funded by the Parkinson’s UK Virtual Biotech and the Michael J Fox Foundation has recently released promising new results. The study, which is led by the company Neurolixis, aims to develop a new drug that could prevent dyskinesia (uncontrollable movements that are a side effect of current drugs).
We supported the Neurolixis team to involve people living with Parkinson’s in planning the trial, with some of you joining online discussion with the company to share your thoughts and suggestions. This led to changes in the study design, including it being shortened to reduce the burden on participants and allowing people to continue taking amantadine for their dyskinesia to avoid excluding them from taking part.
In the recent update, the company shared that, as well as showing promising results in treating dyskinesia, the trial had a positive effect on other motor symptoms of Parkinson’s, such as slowness, stiffness and tremor. Find out more about the study results and the next steps for this research in this blog by Claire Bale, our Associate Director of Research Engagement and Involvement:
Volunteers Week 2023
1–7 June was National Volunteer week! Whether you’ve been a PPI contributor for many years or are new to the role, we want to say thank you for being part of research! The experience, knowledge and time you share to shape research priorities and projects is vital to improve Parkinson’s research. We believe that we will reach a cure and improve the lives of people with Parkinson’s faster, together.
We celebrated Volunteer’s week in a number of different ways. You may remember receiving a short video from the Research Team (if not, you can find it here). We also saw the return of our charity wide ‘All Volunteer Calls’ to hear about the fantastic range of activities that volunteers are doing to support the Parkinson’s community. You can access the video here (you’ll need to log in to Assemble to do so. If you have any trouble logging in please let us know).
It was great to see some of you on the call! You can see Anne Ferrett sharing her ‘memorable moment’ as a PPI contributor in a research project in the call (at 00.28.46 in the recording). If you’d like to share your memorable moment as a PPI contributor, we’d love to hear it so please do get in touch at researchinvolvement@parkinsons.org.uk.
We truly appreciate all that you do and it’s a pleasure working with you. Thank you!
Join the Involvement Steering Group
The Involvement Steering Group (ISG) provides guidance and support to shape and develop the Parkinson’s UK patient and public involvement (PPI) programme. And we’re looking for new members to join us!
The group helps to ensure that our programme is the best it can be to support researchers and the Parkinson’s community to work in partnership to improve Parkinson’s research. This includes:
- Promoting and raising awareness of involvement in Parkinson’s research
- Shaping resources for researchers and the Parkinson’s community
- Setting and monitoring the objectives and priorities of the Parkinson’s UK PPI programme
The ISG is made up of people with lived experience of Parkinson’s (including partners, family members and carers), Parkinson’s researchers, healthcare professionals and the Parkinson’s UK Research Involvement team. You don’t have to have a scientific background to be involved!
The group meets monthly by video-conference and has one to two (optional) face-to-face meetings a year.
If you’re interested in joining the ISG or would like to find out more we’d love to hear from you, please email us at researchinvolvement@parkinsons.org.uk
Co-presenting a PPI workshop at the British Neuroscience Association conference
In April this year we presented a PPI workshop at the British Neuroscience Association conference in Brighton. Attended by people working within the British Neuroscience field, including scientists, students and representatives from companies and funding bodies, the conference is a chance for people to come together to share ideas and learn about the latest research developments.
The PPI workshop was co-developed and delivered by Carroll and Matthew who have Parkinson’s and are PPI contributors, Laura from the Parkinson’s UK Research Involvement team, and Parkinson’s researchers Ellen and Heather. We shared an introduction to PPI, split into small groups to discuss real examples of involvement in research and held a panel Q&A.
A lot of the researchers attending were lab-based researchers. We know that this can be an area where PPI does not happen as often and researchers may feel less confident of how to involve people in their research. We believe that PPI can meaningfully be a part of lab-based research, so it was a great opportunity to share information and signpost to support and resources that are available and discuss some of the challenges and opportunities. We also really enjoyed hearing from others about projects and partnerships already underway.
Heather and Carroll shared their thoughts on how the workshop went:
Carroll:
I was so pleased to see so many researchers, academics and scientists present at our workshop. They enthusiastically shared their experiences of PPI with people with Parkinson’s. The fruitful discussions between us highlighted the need for PPI towards enhancing the quality of research in neuroscience.
Heather:
‘The PPI workshop was a great opportunity to raise awareness and interact about including PPI in all Parkinson’s projects. It was fantastic to speak to people, from just a short workshop, people were energised to include PPI as a fundamental part of their research, new connections were made and ideas generated.’
Have your say: Using technology and devices for Parkinson’s
We’ve seen many technologies that help manage our health and well-being emerge over the last decade, including some specifically designed for Parkinson’s. These developments and the potential benefits are exciting but there are also lots of questions to answer.
Parkinson’s UK is starting a new project to develop tools and resources to help people with Parkinson’s explore the range of available technologies, find the answers to their questions and access technologies that will help them.
We’d like to hear your views and experiences of using technology and devices to help us understand what information and support the community needs in this area. You can complete the survey by clicking on this link.
Thank you for your help! We’ll be keeping you updated on this project as it progresses.
Highlights from World Parkinson’s Congress 2023
The World Parkinson’s Congress 2023 took place in Barcelona from 4 to 7 July. The congress is an opportunity for people from across the Parkinson’s community to come together to learn, share and discuss the latest scientific discoveries, care practices and more.
Nikul, Parkinson’s UK’s Research Involvement Lead, attended the conference this year, along with a number of colleagues from the Research Team and wider charity . He shared his reflections on the event:
The sheer volume of people who attended the congress was incredible and it was invigorating to see so many people from across the community under one roof discussing, connecting and sharing experiences and ideas. There were so many fascinating posters and talks being led by researchers and people living with Parkinson’s.
At the congress I was part of a panel sharing our experience of setting up the Patient Engagement Council for Parkinson’s Research (PECPR) with the pharmaceutical company UCB, the Parkinson’s Foundation and people with Parkinson’s. We shared our aims of the project and our learning so far. We also presented this work in a poster, which you can read by clicking on this link. We hope that this will help and inspire others to embed the voice and experience of people with Parkinson’s in drug development from an early stage too.
We also presented a poster on one of the priorities identified by the PECPR, exploring how to meaningfully involve people with Parkinson’s in the development of a Target Product Profile (TPP). A TPP is a guidance tool for the development of a treatment with expected and minimally accepted characteristics. A working group was formed to develop this project. You can read more about the project and it’s outcomes in the working group’s poster, here.
I spoke at an industry round table in the clinical research village and shared my experience of supporting industry to work in partnership with people with Parkinson’s and the importance of increasing the diversity of people taking part in clinical trials.
We’ll be sharing a series of blogs of some of the research highlights from the conference. Dr Becky Jones, our Research Communication manager, has written the first blog on highlights from the ‘Hot Topics’ sessions, which took place first thing in the morning each day. Read the blog at the link below:
If you attended the Congress and presented a poster that you would like to share with the wider Parkinson’s UK PPI network, please let us know at researchinvolvement@parkinsons.org.uk. We’d love to help to share work that you’ve been involved with!
Online information session on different PPI roles
The NIHR Cambridge Biomedical Research Centre (BRC) will be holding an online information session about different PPI roles in health research on Tuesday 12 September 2023, 1–2pm.
The 60 minute information session will cover different roles PPI contributors may hold in research such as attending focus groups, sitting on steering groups or being a co-applicant on a research project. As well as sharing information about the roles you’ll also hear from public contributors on their experiences in these different roles and there will be an opportunity for Q&A.
The event is free and open to members of the public in the UK with an interest in PPI. Click the link below to find out more about the event and to book your space.
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
