Spring 2022- Patient and Public Involvement newsletter
In this edition we introduce a new member of the team, learn insights from a clinical trial advisory board and share an opportunity for you to have your say in a research study.
Introducing a new member of the Research Involvement team
Hi all! Hope everyone is doing well. My name is Nikul and I joined the Parkinson’s UK Research team in February 2022 as the new Research Involvement Manager. Before joining Parkinson’s UK, I worked at another charity called Crohn’s & Colitis UK as their Research Programme Lead, and led on Patient and Public Involvement and targeted research into chronic pain.
My current role will be focused on embedding high quality Patient & Public Involvement (PPI) in preclinical and clinical Parkinon’s research. In particular, I will be looking into how your voices and experience can help shape research led by commercial organisations, such as pharmaceutical companies. I am very excited about having this opportunity to work with everyone in the network and look forward to interacting with many of you in the near future.
Insights from an Advisory Board shaping a clinical trial
Over the last year we have been supporting the company 4D pharma to work with a Patient Advisory Board to shape their upcoming clinical trial. The clinical trial will be testing a new therapy targeting the bacteria that live in the human gut (the microbiome) and the gut-brain axis.
The board has been involved in shaping different aspects of the clinical trial- from study design to participant information- to ensure that it is meaningful and feasible for people living with Parkinson’s.
In January, Eirwen Malin, a member of the Advisory Board, and Louise Markinson, Programme Development Director at 4D Pharma, shared their experiences of the Advisory Board at an event hosted by the North of Scotland Parkinson’s Research Interest Group.
You can watch a recording of the meeting here. The first part of the meeting is about the science behind the new therapy, then you can hear from Eirwen and Louise on the board’s development, activities and learning from 59 minutes in!
Refresher module
We have a number of resources to support you in your PPI contributor role. One of these is an extra training module which we launched in 2019. The module is designed based on feedback from you and recaps the first three home-based training modules that you complete when you first become a PPI contributor, It includes:
- Where PPI fits in the research process
- Communicating in plain English
- PPI to improve the design of research studies
If you’d like to refresh your knowledge on these topics you can watch the video here:
Once you’ve watched the video, let us know by emailing us at researchinvolvement@parkinsons.org.uk and we’ll send you the activity to complete.
Taking steps towards race equality in Parkinson’s research
Parkinson’s affects people of all ethnicities. However we know that people from Black, Asian and Minority Ethnic backgrounds are underrepresented in research. That’s why last year we launched our race equality project with the aim of developing a clear roadmap for the charity to drive race equality in research.
Our first step was to form a steering group made up of people with Parkinson’s and research professionals from Black, Asian and Mixed heritage backgrounds who are shaping and guiding this work.
The group highlighted was the importance of reaching out and listening to a broader range of people. To do this we worked with two expert patient engagement organisations to:
- Hold a workshop with leaders from organisations who work within different ethnic communities
- Interview individuals with Parkinson’s from Black and Asian backgrounds who are not connected to Parkinson’s UK
These activities helped us to identify three key areas that we need to understand and address to make research more accessible and relevant to people from different ethnic backgrounds. These are:
- Cultural differences in the perception of Parkinson’s
- Mistrust of research and its benefits
- Lack of appropriate information and support
We now want to take what we’ve learnt forward to create a clear plan to drive forward representation in research in 2022.
To find out more read Claire Bale’s (our Head of Research Communications and Engagement) blog here.
Have your say on involving patients and the public in statistical analysis plans
Involving people with health conditions in the design of clinical trials is vital to ensure that the clinical trial is relevant and practical for the future participants. Many clinical trials are now designed with patient and public involvement. However, there are some elements of trial design, such as statistical analysis planning, that rarely involve people with health conditions or the public.
There is some work that suggests that the public believes PPI in numerical aspects of clinical trials is important, but those running the clinical trials find involving people challenging.
Beatriz Gulao from the University of Aberdeen and co-investigators are carrying out a research project aiming to address this by identifying the most important items of statistical analysis plans to involve patients and the public. Beatriz and the team are looking for PPI contributors to take part in a short survey as part of the research study. Find out more about the study here.
To take part in the survey, first read the participant information sheet and then access the survey here.
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
