Winter 2024 — patient and public involvement newsletter
In this edition, we look back on 2023, we share experiences of shaping research from PPI contributors and researchers, an opportunity to share your thoughts on the PPI contributor role, and more!
Shaping research on oral health and Parkinson’s
Jessie Tebbutt, an early career researcher at the University of Sheffield, is developing a project looking at improving mouth and dental health for people with Parkinson’s. To understand the experiences of people with Parkinson’s and to make sure her research was of interest and relevance to the Parkinson’s community, Jessie worked with members of the Parkinson’s community, including some of you.
We caught up with Jessie to hear about her experience of carrying out Patient and Public Involvement for her research project:
When I reviewed the published research literature, I noticed that there was minimal representation of people living with Parkinson’s. For me, the purpose of involving people at an early stage in the research was clear — to make sure my project was actually of interest and relevance to the Parkinson’s community.
Read Jessie’s blog to find out more about her experience by clicking on the link below.
PPI Contributor survey
You may have already seen this through the email we sent out earlier this year, and thank you to everyone who has already filled it in!
As a PPI Contributor, your experience and insights are crucial in shaping and improving the role. This is why we are running the PPI Contributor survey. By taking part, you have the opportunity to share your thoughts, suggestions, and ideas on how we can improve the PPI Contributor programme.
The survey runs until Sunday 4 February and was designed by our Involvement Steering Group, which includes individuals affected by Parkinson’s and Parkinson’s researchers, and aims to gather feedback on your PPI Contributor experience.
We are particularly interested in hearing about ways to make the service we provide even better. Additionally, we will be collecting demographic information to work towards fostering a more diverse and inclusive PPI Contributor Network.
Gary, a PPI Contributor and member of the Involvement Steering Group, explains the aims of the survey.
Your input will impact the future of our programme, ensuring that it meets your needs.
We need your help! Please take a few minutes to complete the survey and help shape the future of our PPI Contributor programme!
We will feedback on what you have told us in a future PPI Newsletter.
If you have any questions or would like to receive a hard copy of the survey, then please let us know by emailing researchinvolvement@parkinsons.org.uk
Published article sharing reflections on working with people affected by Parkinson’s in research
In 2020, we supported researchers from PRIME-UK to involve people affected by Parkinson’s in their research. PRIME-UK is a programme of research projects looking to improve the quality of life for people with Parkinson’s. As part of their work, researchers and PPI contributors from the study have published a paper on their reflections of working together.
Dr Emma Tenison, a geriatrics doctor and researcher with PRIME-UK explains:
I first started working with public contributors in the early phase of my PhD research, which was part of the PRIME-UK programme. I was grateful to Parkinson’s UK for their help in advertising the opportunity to the Parkinson’s community and to the public contributors for their valuable input, which improved the readability of our study documents in particular.
Some of our research team wrote a paper, together with two of the public contributors, in order to share our learning and reflections, and offer some key recommendations for involving patients and the public in Parkinson’s research.
The paper includes copies of the impact logs kept by PPI contributors and researchers, which were used to capture the changes made to the research as a result of the PPI contributors input. Examples of their impact include changes to the terminology used in study materials, improved confidence for both researchers and PPI contributors, and improved research related outcomes for research projects.
Sue, who was diagnosed with Parkinson’s in 2012, is a PPI contributor and co-author on the paper. Sue shared her experience of how it prompted her to reflect on her experience of PPI more widely:
I found PRIME-UK beneficial as it provided a prompt and a structure to reflect upon the value of the PPI volunteering that I do.
I realised I had been involved in PPI since about 2017, maybe before, and in that time I must have corresponded with a significant number of researchers. However I hadn’t recorded who they were or where they were based or what they hoped to research.
I hadn’t made much effort to really reflect on what I do. To consider if I could do a better job and if there were standards or guidelines to consult.
I know that my voice, my opinions, my experience of the condition cannot represent all People with Parkinson’s but I can try hard to listen when we get together and use the knowledge gained when asked for my views.
If you’d like to find out more, you can read the full published article here.
Co-designing Patient Reported Outcomes
Patient Reported Outcomes, or PROs, are tools used in clinical trials that, if done right, allow participants to report the symptoms and experiences that are meaningful to them. They play a crucial role in understanding the impact of treatments on patients’ lives. Unfortunately, not all PROs are good as some don’t ask the right things, ask about them in the wrong way, or are used in the wrong people.
In previous newsletters we have spoken about how Parkinson’s UK has been working with the pharmaceutical company UCB, the Parkinson’s Foundation in the US, and people affected by Parkinson’s, including some of you, to co-design PROs for early-stage Parkinson’s.
By involving those with lived experience of Parkinson’s, the PROs developed were better able to reflect the experiences of those with the condition than previous PROs.
The team found that although involving people affected by Parkinson’s required additional resources and coordination, the strong positive impact of including those affected by Parkinson’s made it well worthwhile. As a result, they have published an article recommending the involvement of people affected by various conditions in research on clinical outcomes going forwards.
If you’d like to find out more, you can read the full published article in the journal below.
Looking forward: next steps towards race equality in research
Since 2021, we’ve been working on our Race Equality in Research project to address the lack of diversity in Parkinson’s research.
Thanks to the suggestions of the Race Equality in Research Steering Group and feedback from our 2023 Research Support Network survey, we’re pleased to share our renewed priorities for the year ahead.
To find out more about our next steps, please read the link below.
Thank you!
And finally, we wanted to thank all the members of our PPI contributor network for all their help over the past year. By answering surveys, attending focus groups, joining advisory boards and getting involved in different ways you have helped to ensure that Parkinson’s research is relevant and meets the needs of the Parkinson’s community. Thank you!
In 2023, PPI Contributors were busy. They shaped over 50 Parkinson’s research projects, by:
- Helping ensure that plain English summaries and study documents were clear and understandable for different types of projects, from lab based research through to clinical trials.
- Taking part in over 12 focus groups
- Joining over 13 advisory groups
- Delivering workshops at national and international conferences encouraging researchers to work with the Parkinson’s community and sharing best practice
We also ran 3 rounds of home based training and welcomed 18 new PPI Contributors from across the UK to the network!
We have heard from researchers that they found working with the Parkinson’s community to be invigorating and motivating. Researchers have learnt a lot from working together with you, and are now putting this knowledge into practice in their work.
One researcher who received input on their plain English summary told us:
I was happy with the response I received. I learnt that pitching to lay people is very important and how to explain the research in lay language that can be understood by all.
Aliya Warden, who received feedback on her study design, shared that:
Talking with the PPI contributors reaffirmed why I am completing this research. They motivated me to strive forward with the project to help benefit those affected by Parkinson’s. I also obtained valuable insight into how everyday life is affected by Parkinson’s and how “everyone’s Parkinson’s is different”. The contributors gave me confidence in myself as a researcher and I cannot thank them enough!
Audrey Roulston found that involvement:
Helped to keep the project realistic in terms of proposed recruitment methods, data collection instruments in terms of burden / time required, and making sure the intervention would be appropriate to their needs.
Thank you for all of your support, time and energy in 2023! We are looking forward to what 2024 has in store!
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
