Spring 2023 — patient and public involvement newsletter
Welcome to our first patient and public involvement (PPI) newsletter of 2023! In this edition we have some new grants, reflections on PPI partnerships, an opportunity to have your say and more.
Shaping research in 2022
We’re sorry we missed our Winter newsletter last year. Hopefully you saw our message from the whole Research team highlighting some key research moments from 2022. If not, or if you’d like to recap, you can find the blog here.
Last year PPI contributors shaped nearly 50 research projects! These projects have covered a huge range of Parkinson’s research, from lab-based to clinical studies and across different stages of the research cycle. From helping to identify and prioritise research questions to shaping the design of studies so they are acceptable and practical for future participants. From improving how the research is communicated to helping manage the research by being part of a steering group. You are helping to ensure Parkinson’s research is higher quality, more efficient and more meaningful to the Parkinson’s community, thank you!
Here’s some feedback from researchers that we worked with in 2022 on the impact that PPI has had on their research:
The [advisory] group helped to shape the research questions to ensure what I was asking would lead to meaningful answers for people with Parkinson’s. They also used their lived experience to contribute to the analysis of the data and helped me to see where the literature was lacking, or to understand the nuance of certain aspects of the results.
Researcher
[PPI] contributors made some insightful comments re the language I used as well as how potential recruits would respond to the study design which helped shape the study in a more acceptable way.
Anja Lowitt, Researcher
The feedback provided on the abstract was very constructive. In particular, the feedback helped me identify parts of the abstract which required additional information and jargon to avoid or to explain.
Francesco Aprile, Researcher
A huge thank you for all that you do to improve Parkinson’s research!
We are here to support you and answer any questions you have about being a Patient and Public Involvement volunteer. If you have any issues, feedback or positive experiences you’d like to share, please let us know. You can contact us at researchinvolvement@parkinsons.org.uk.
New Parkinson’s UK research
At the start of the year we awarded three new grants to researchers who applied to our ‘non-drug approaches’ grant round:
- One project will build on an approved NHS exercise programme ‘Keep On Keep Up’ and find ways to adapt it for people with Parkinson’s to address balance, strength and fitness.
- Another project will develop and test a programme to address key mental health needs, such as anxiety and managing memory and thinking problems in Parkinson’s.
- A third project will test if an exercise game can help to change brain activity and improve balance for people with Parkinson’s.
The researchers have worked with members of the Parkinson’s community (including some of you) to shape their applications. This included to ensure that the research is addressing a question that is relevant and meaningful, to shape the study design so they are feasible and practical, and ensuring the plain English summaries were clear and understandable.
We’ll be keeping you informed of any future opportunities to shape these projects, so keep an eye out for these!
Reflections on a long term PPI partnership published in journal
Ellen Poliakoff, a cognitive science researcher, and Matthew Sullivan, who was a senior lecturer in Biosciences and has Parkinson’s, have been collaborating for over 10 years. Both Ellen and Matthew have been members of the Parkinson’s UK Involvement Steering Group and have been instrumental in shaping our PPI programme.
At the beginning of the year Matthew and Ellen published their reflections on their partnership in a journal. They describe how the partnership started and how it has evolved. They also share learnings they’ve gained along the way, including what they consider are key ingredients for a successful collaboration, as well as the challenges they have experienced.
Reflecting on the partnership, Matthew said:
‘When we started this collaboration, I was relatively newly diagnosed. Ten years on, my condition has progressed, and so I now bring a new perspective. PPI collaborators have real lives too, which is exactly where the value of PPI lies.’
Click the link below to read the full article.
Developing the iFall app: progress and co-production
Over the past 2 years, Rosie Morris, a researcher at Northumbria University, and co-investigators Elaine Webster and Gerry Standerline, who both have Parkinson’s, have been developing an app to better monitor falls in Parkinson’s.
We caught up with Rosie, Elaine and Gerry to hear how the development of the app (which is called iFall) is progressing so far and how they have been co-producing the app together.
A key aspect of the project has been bringing together different people with expertise and skills to ensure that the app is the best that it can be. Gerry shared more about the iFall team:
‘In our case, our team is made up of people with different skills, like different pieces of the puzzle coming together. It was essential to assemble the right people. This meant researchers like Rosie, and people with Parkinson’s like myself and Elaine, but also people with technical expertise in app development.’
You can read more about the app, Rosie, Elaine and Gerry’s experience and their top tips for co-production in their blog, here:
Parkinson’s stories
Did you know that you can find out more about people’s personal experiences of Parkinson’s on our website?
There are over 40 different symptoms of Parkinson’s and living with the condition looks different for everyone. When designing a research study, it is important that the study is as flexible as possible for future participants to ensure that it is inclusive and accessible. PPI contributors play an important role in raising awareness of this with researchers and helping them to understand ways they might be able to do this.
Take a look under ‘stories’ in the magazine online by clicking on this link to read more about different experiences of life with Parkinson’s as told by members of the Parkinson’s community.
Have your say: Research Support Network (RSN) survey
Our Research Support Network (RSN) brings together people driven to help find a cure and better treatments for Parkinson’s. We want to hear your thoughts on our RSN emails, taking part in research and more in our RSN survey.
Your feedback will help us shape and improve our research communications and engagement work and identify any gaps in our current Research Support Network programme.
Complete the survey here. It will be open until 12 May 2023. (If you are signed up to the RSN you’ll have received this survey in the April 2023 Research Roundup email too- there’s no need to complete it twice, so please feel free to ignore this link if you’ve already done it!)
The survey will take about 20 minutes to complete and all answers are completely anonymous. If you have any questions about this survey or how the data will be used, please email Liz Nash, Research Support Network Manager, on rsn@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
