Spring 2018 — patient and public involvement newsletter
We have introduced this as a way of sharing feedback on the outcomes of PPI input, as well as to keep you up to date on the Parkinson’s UK PPI programme.
Updates on grant success for researchers
- Chris Elliott, from the University of York, was awarded a small grant by Parkinson’s UK for his research investigating genetic causes of Parkinson’s and the LRRK2 gene. Chris worked with 5 PPI volunteers to get feedback on his plain English summary.
- Claire O’Callaghan, from the University of Cambridge, consulted with PPI volunteers on the design of her research study which aimed to develop new treatments to improve motivation in Parkinson’s. Claire’s funding application was successful and she has started her 12-month project.
“The PPI volunteers provided such detailed and insightful feedback, that hugely benefited the design of our study and the quality of our grant application”, comments Claire.
The deadline for our first funding call of the year was 7th February. PPI volunteers supported 8 applicants in writing their lay summaries and giving feedback on projects. A further 8 applicants worked with external PPI groups to develop their applications, so it’s great to see a strong PPI element in lots of the applications! We’ll update you on the outcomes of the call in the next newsletter.
In April 2017, we launched our home-based PPI training. Since then, we have run 5 rounds of the training, and we now have 124 PPI volunteers across the UK!
Plain English summary review for 2017 project grants round
For the first time in 2017, we trialled a ‘plain English summaries review’ for our project grants. A team of PhD students read through grant applications and highlighted projects where the lay summary was either too scientific or did not accurately reflect the scientific summary. The researchers leading these applications were then invited to work with PPI volunteers to improve their summaries before their application was reviewed.
PPI volunteers worked with Heike Laman, from the University of Cambridge, to help improve her plain English summary. Heike’s funding application was successful, and she was awarded £200,000 for her 3-year project investigating how the Fbxo7 (aka PARK15) gene affects the progression of Parkinson’s in mice.
We will be doing the same for this year’s project grant applications, so look out for an email from us next month about how to get involved in this.
Patient and Public Involvement in dance research
Anna Carapellotti, a PhD student from Queen’s University Belfast, successfully applied for a Research Involvement Award from Parkinson’s UK for support with PPI in her research investigating the benefits of dance for Parkinson’s.
In February, we facilitated a focus group meeting in Belfast, where people affected by Parkinson’s had the chance to share their thoughts on Anna’s research and work with her on the design of the study.
Discussions focused on a number of topics, including encouraging participation, the logistics of the classes and the plans for assessments. The group highlighted the importance of using the right wording in advertising the study, and advised Anna on when the classes should be held. People were happy with the suggested assessments, but emphasised the need for flexibility on when they are completed.
One PPI contributor commented: “As I am already an advocate of dance for people with Parkinson’s, I found the proposed research very interesting and look forward to future developments.”
Several people who attended the focus group meeting are now part of the advisory group for the project.
“Through this project, it has become clear to me that PPI is both a valuable and necessary step in designing exercise interventions that involve people with Parkinson’s”, said Anna.
Anna has really valued the chance to work with people affected by Parkinson’s, and has written a blog for her University website to share her experience with others. You can read her blog post here.
Volunteers are vital to the work of Parkinson’s UK — we couldn’t do our work without you! Our volunteering team have put together an induction which contains everything you need to know about volunteering with Parkinson’s UK. The modules are freely available on our website for all volunteers to access — you can find them here.
Some of you will have gone through the induction already, but we just wanted to highlight it to those who haven’t seen it yet.
There are four modules featuring videos, quizzes and scenarios, although some parts are less relevant for the PPI role — we’d recommend taking a look at modules 2 and 3, which cover: the vision and values of Parkinson’s UK, ways that staff and volunteers are working together to achieve the charity’s goals, and the support provided for volunteers.
We hope this helps you feel inspired, supported and informed in your volunteering role with us. If you have any questions about the PPI role, please get in touch with us at researchinvolvement@parkinsons.org.uk.
If you have any feedback on this newsletter, or suggestions for what you’d like to see in future editions, please let us know! Email us at researchinvolvement@parkinsons.org.uk.
