Summer 2024 — patient and public involvement newsletter
In this edition, we have updates from the Research Involvement team, information on Par-Con, an opportunity to get involved, and more!
Join us at Par-Con!
Par-Con is our free, 2-day online and in-person event for the Parkinson’s community. There will be sessions on the latest research, cutting-edge technology and living well with Parkinson’s. There’ll also be opportunities to try physical activity tasters and meet and connect with others.
Par-Con 2024 is a hybrid event, with all talks and panel sessions available online and in-person. The in-person places have now sold out, but you can join us online. You can choose to attend a single day, or register for both days.
When? Friday 11 and Saturday 12 October
Where? Online or Royal Armouries Museum, Leeds, LS10 1LT (sold out)
You can find out more and register your interest for Par-Con by following the link below.
Working together to shape a home-monitoring device
Over the past year, Wolverhampton University researcher Dr Tina Smith has been working with advisory group members, including PPI contributors Chris and Dr Paul Cropper. They have worked to develop a home-monitoring device to allow people to monitor their movement symptoms of Parkinson’s from home.
Read about their experiences of working together in the blog below.
New community group for people from Black, Asian, Arab and Mixed Heritage backgrounds
The Race Equality in Research Steering Group have worked together to set up a community group for people from Black, Asian, Arab and Mixed Heritage backgrounds to:
- Connect and share experiences with other people living with Parkinson’s
- Learn about support and opportunities to live well with Parkinson’s
- Get involved in Parkinson’s research
They meet monthly online. You can find out more by phoning Zahra Bibi on 07964037154, or emailing zbibi@parkinsons.org.uk
You can also find out more by following the link below.
Results from the PPI Contributor survey
In the spring newsletter, we let you know that we were looking at the results of the PPI contributor survey to find ways to better support you as a PPI contributor.
Now we’ve analysed the responses, we are sharing the highlights, areas for development and some of our plans to address these. Thank you to everyone who completed the survey at the start of the year!
Highlights
Areas for development
We have already started working on some of these areas and we will be doing more in the months to come. For example we:
- Set up an advisory group to help us diversify the PPI contributor role with a focus on ethnicity and education level
- Sent reminders to researchers about providing feedback on the impact of PPI and are reviewing our support and messaging for researchers
- Shared training opportunities in PPI newsletters
- Are encouraging researchers to be flexible with how they involve PPI contributors. For example, by offering options to contribute both over the phone/video call and by email
- We are also planning on running informal meetups for PPI contributors to connect with each other. Please keep an eye on your inboxes for opportunities to shape these meetups soon!
Answer a survey on diagnosis and misdiagnosis in Parkinson’s
Dr Tim Chisholm and researchers at the University of Cambridge are working to develop a blood test that can detect Parkinson’s early, and more accurately distinguish it from similar conditions. To do this, they are working on tests that identify molecules in the blood that are linked to the early stages of Parkinson’s.
At the beginning of the year Tim spoke to PPI contributors about their experiences of diagnosis and misdiagnosis. He explained that
Working with PPI contributors has been helpful and rewarding. I’ve been fortunate to have conversations with a range of people with diverse experiences and insights. These PPI contributors have helped ensure our research stays focused on what is most important to those directly affected by Parkinson’s. Their input has helped refine the questions we ask in the lab, to steer our research, and helps to put the work we do in context.
Based on these conversations, Tim has created a survey to understand how a Parkinson’s diagnosis affects individuals, whether receiving an incorrect diagnosis is common, and the type of support currently provided — or needed — during the diagnostic process. The results from the survey will help to shape Tim’s future research and ensure it is addressing topics that are most important to people affected by Parkinson’s.
If you’d like to help shape Tim’s research, please complete the survey here by Friday 20 September
Encouraging flexibility in research studies
We’ve heard from members of the Research Support Network (RSN) that too often opportunities to take part in research are too far away and members aren’t able to take part in research from home.
While we’re working to increase opportunities to take part in Parkinson’s research across the UK, we’d also appreciate your help in encouraging researchers to consider flexibility in the design of their studies. If you’re working with researchers to shape the design of the study, please help us to spread this message!
This could include asking if it is feasible for future participants to take part in the research from home, reducing the number of site visits needed, offering support with travel to study sites and options to take part over the phone.
By increasing the flexibility that’s built into Parkinson’s research, more people will be able to take part. This will help researchers recruit more people onto trails and will ultimately lead to benefits to Parkinson’s research.
Free training on clinical research
Future Learn is running a free training course focused at looking at improving healthcare through clinical research. In the course, you’ll find out how medical treatments are discovered, tested and evaluated to improve healthcare for all.
The course, which can be done at your own time and pace, takes place over 4 weeks and takes approximately 4 hours to complete.
If you are interested in taking the course you can find more information in the link below
https://www.futurelearn.com/courses/clinical-research/11
If you’d like to share some PPI that you’ve been involved with, or if you’d like to give feedback on any aspect of our PPI programme, please get in touch anytime!
Email us at researchinvolvement@parkinsons.org.uk
