Summer 2021- public and patient involvement newsletter

In this edition we celebrate our volunteers and introduce a new member of the Research Involvement team. We also share blogs on our work on race equality in research and shaping clinical trials for a new therapy.

New face in the Research Involvement team

Hello everyone! I wanted to take this opportunity to introduce myself. My name is Laura Jacobs and I joined the Research Involvement team at Parkinson’s UK at the start of June. Before joining Parkinson’s UK I worked at the charity Muscular Dystrophy UK as Research Officer for nearly five years and prior to that I completed a PhD at the University of Sheffield in the Department of Biomedical Science.

I am really excited to be working with you all to make sure that your voices help to shape Parkinson’s research, so that the research and its outcomes are as effective and meaningful as possible.

As well as working with Natasha and the Involvement Steering Group on delivering and developing our Public and Patient Involvement (PPI) programme, I’ll be sharing PPI opportunities with you. I’m here to help support you in your role- so if at any time you have any questions or thoughts to share around research involvement please do get in touch!

Volunteers’ Week 2021- Thank you!

1–7 June saw us celebrate Volunteers’ Week. It was a chance to reflect on, and say thank you for, all of the important work that volunteers do. You might have seen the blog from our Research Director, Arthur Roach, highlighting and celebrating the contribution of our network of over 300 research volunteers across our research programme.

We want to echo Arthur and say a huge thank you for the hard work and passion that you bring to your role as PPI volunteers! You are helping to change Parkinson’s research for the better- from refining research questions and shaping study design to steering research as it is carried out and helping researchers communicate about their findings. It’s a pleasure to work with you all in driving Parkinson’s research forward!

Volunteers’ week also saw the opening of nominations for the 2021 Volunteers’ Awards. The awards celebrate the unsung heroes who drive Parkinson’s services, support and vital research. Find out more about the awards here or nominate a volunteer who has made a difference to you here (nominations should be submitted by August 31).

Reaching for race equality in research

One of our priorities is to improve the diversity of Parkinson’s research. Parkinson’s affects people of all ethnicities and races, however we know that people from Black, Asian and Minority Ethnic backgrounds are underrepresented in research. It is important that this changes so that better treatments and care are possible for everyone.

We want to develop a clear roadmap for the charity to drive race equality in research and have formed a steering group who are shaping and guiding this work. The group is made up of people affected by Parkinson’s and research professionals from Black, Asian and Mixed race backgrounds, as well as colleagues from Parkinson’s UK. So far the steering group has met twice and has worked together to define a project plan and share ideas on starting conversations about research.

If you work with ethnically diverse communities or know organisations that could help, please contact participation@parkinsons.org.uk.

Find out more about this work in this blog by Claire Bale, our Head of Research Communications and Engagement.

Detecting and monitoring dementia in people with Parkinson’s

In May we supported Professor Steve Gentleman, from the Parkinson’s UK Brain Bank, and his colleague Alice , with feedback on their research proposal on dementia.

The team, who are based at Imperial College London, are developing an online cognitive self-assessment tool to detect the early stages of Parkinson’s dementia. It will enable monitoring of how cognitive abilities change over time, and this data will eventually be paired with donated brain tissue to provide an invaluable resource for research into Parkinson’s dementia.

Some of you watched a brief introductory video about the project, tested a demo of the online platform and completed a short questionnaire to give your feedback.

Alice has since been in touch to share a thank you message and update from the research team:

“‘I just wanted to take the time to thank you and the PPI network so much for all your help.

We were overwhelmed by the response we received within such a short time frame and by the evident interest and enthusiasm for research into this area.

The suggestions and comments received were incredibly helpful in helping hone the study design and are currently being incorporated into the final product.

We plan to trial the final version in a pilot study imminently and will hope to come back to the PPI network for further input at a later date.”

The Parkinson’s UK Brain Bank is the world’s only brain bank solely dedicated to Parkinson’s research. Find out more here.

Working together to shape clinical trials for a new therapy

We support pharmaceutical companies to work in partnership with people affected by Parkinson’s to deliver better treatments faster.

We have worked with the company 4D pharma to set up a Patient Advisory Board to help guide their upcoming clinical trials of a promising new therapy. The therapy targets the microbiome — the collection of bacteria that naturally live in the human gut — and the gut-brain axis.

The Patient Advisory Board will provide the perspective of people affected by Parkinson’s on all aspects of clinical development. The board will help ensure that the study is feasible and practical for future participants and the outcomes are meaningful to people affected by the condition.

Find out more about the partnership, including from Helen, a volunteer, on her reasons for joining the Patient Advisory Board in this blog.

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