Autumn 2021 patient and public involvement newsletter
In this edition we find out what volunteers told us in the PPI survey, learn how people affected by Parkinson’s have helped to inform a clinical trial and hear the latest on our upcoming research conference, Par-Con 2021.
Results from the PPI volunteer survey
Earlier this year we asked you to share your thoughts on the Parkinson’s UK patient and public involvement (PPI) contributor role. A big thank you to the 53 of you that filled in the survey! Your responses are helping us to understand which aspects of the PPI programme are working well and, importantly, where it can be improved. We have summarised some of the results below.
34% of respondents felt that further training would be useful. Specific areas mentioned included:
- Working with the pharmaceutical industry
- PPI CVs or diaries to record your own experiences
- signposting to external training opportunities.
We will continue to build our training and support resources to help support you in your role.
We received really useful feedback on barriers to the role, you can see some examples that were raised below. We want this role to be as accessible as possible and will work to reduce these barriers.
We heard that many respondents would like the opportunity to network with others in the role, to be able to learn from each other and share experiences of PPI. We would love to explore this idea further with you to see how we can best connect you and gauge interest in the different formats this could take- watch this space!
It was great to hear that many of you felt like you were, or hoped you were, making a difference in the role.
‘My PPI role keeps me up-to-date with current research development in all aspects of Parkinson’s. I feel valued and appreciated, which in turn increases my confidence and ability in interacting with researchers.’
‘I feel that I have been able to help researchers through evaluating grant proposals and plain english summaries. I also feel that, by sharing my lived experience as a person with Parkinson’s, I am helping researchers to consider issues that they may be unaware of and to reflect the impact that certain communications may have on someone living with Parkinson’s.’
Thank you for sharing your experiences and the impact the role has on you personally! These will help us to share the impact of PPI with the wider research community.
A recurring theme across the survey was the importance of feedback, which people said is not always received. Some of you felt that without feedback, you didn’t know if you were making a difference. Feedback is vital in PPI and we will be reinforcing this message to researchers. We will also look at how we can improve this ourselves, such as by providing updates in this newsletter.
Thanks again! Your responses will help us to develop our PPI programme. If this sounds like something that you would like to be more involved in, we have a volunteering opportunity that might interest you, please read on….
Join the Involvement Steering Group!
The Involvement Steering Group (ISG) is a vital part of our patient and public involvement programme and informs and prioritises all aspects of PPI in research at Parkinson’s UK. The group helps to develop our PPI programme to ensure that it meets the needs of all relevant stakeholders, including researchers and people affected by Parkinson’s.
The group is made up of people affected by Parkinson’s, Parkinson’s researchers and the Research Involvement Team. We are currently looking for some new members to join us!
This is a flexible, home-based role. The ISG meets monthly by video-conference and has one face-to-face meeting a year (in London).
So if you have an enthusiasm for PPI in Parkinson’s research and you’re interested in finding out more about this role, we’d love to hear from you! Find out more here or email Laura at researchinvolvement@parkinsons.org.uk
Understanding sleep problems in Parkinson’s
Sleep problems are known to be a symptom of Parkinson’s. Researchers from a biotech company, Clexio, are developing a potential new treatment that aims to help with sleep problems and early morning off in Parkinson’s.
We worked with the company to develop a survey to help them to understand more about these issues from the perspective of people with Parkinson’s. Before being shared more widely the survey was reviewed by a small group of people affected by Parkinson’s to ensure it was clear and relevant. 396 people with Parkinson’s completed the survey — a fantastic response! This provided important insight into the range of sleep problems experienced, how it impacts quality of life and what people would want from a new drug.
Clexio is now using this information to help shape their plans for an upcoming trial to test a potential new treatment for sleep and early morning off in people with Parkinson’s.
Find out more, including the key takeaways from the survey and sleep tips from survey respondents, in this blog
Par-Con 2021: Improving lives through research
Join us on 19–21 October 2021 for Par-Con 2021, our free online conference for the Parkinson’s community. This year’s conference theme is improving lives through research. There will be talks from researchers, people with Parkinson’s and healthcare professionals about the latest Parkinson’s research, including practical tips for living with the condition. And if you can’t make it for the live event, all the content will be recorded and available for you to watch for 30 days after.
Par-Con 2021 has been designed in partnership with a team of volunteers with Parkinson’s, family members and friends. Neil Morrison, a member of the Par-Con working group, has shared more about how people affected by Parkinson’s have been involved in the development of the event:
The program for the conference was produced in draft by the whole working group. We then broke down into small subgroups to design each session- outlining who were the speakers and how it was to be done…
..This is a conference about research but aimed directly at people affected by Parkinson’s, designed by people affected by Parkinson’s.
Find out more about the working group and the conference in Neil’s blog.
You can see the full agenda and register for the event here.
Staying connected with your participants — a toolkit for researchers
Keeping participants informed is an important part of a research study but it doesn’t always happen. We know that good communication is often an element of study design that you share insight on as PPI contributors.
The Staying connected with your participants toolkit for researchers has been co-produced by Parkinson’s UK, researchers and the Parkinson’s community. This innovative new toolkit is designed to keep people who’ve taken part updated and engaged until the research findings are published.
In August we held a zoom call to share what the toolkit is, why and how it has been developed and how it might be useful for PPI contributors. We recorded the call, so if you would like to watch it, or if you want to find out more about the toolkit, please email us at researchinvolvement@parkinsons.org.uk.
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
