Autumn 2018 — patient and public involvement newsletter

It’s been a busy few months, engaging with a variety of external organisations and companies.

Annie Amjad
Oct 31, 2018 · 6 min read

New training for PPI volunteers

Last month, we ran our first ever ‘Contributing to research meetings, steering groups and panels’ workshop for PPI volunteers.

The aim of the workshop was to help increase volunteers’ confidence in contributing to research meetings. We’ve had more opportunities like this to share with PPI volunteers recently, and last year volunteers told us that this was an aspect of the role they would like further support and training in.

During the workshop, we discussed the role of PPI volunteers at research meetings, and explored top tips on coping with anxiety and challenging situations when working with researchers.

Some of the feedback we received from the volunteers who attended the day:

“The workshop allowed me to go into the future with a greater understanding of my role as a volunteer. I will be less hesitant in future and will use my newly acquired bank of knowledge to add to the quality of my contribution.”

“Really enjoyed it, got to know some lovely people and learnt a lot more about what’s involved in being a volunteer and it has made me more confident in that I feel I can participate more on future occasions.”

We also received some constructive comments about what we could do differently in the future, such as:

“ It would have been useful to have someone ‘pretending’ to be a researcher and that we were all taking part in a real research session.”

We’ll be working with Janet and Matthew, the two wonderful volunteers who developed and delivered the training with us, to understand how we can improve the workshop in the future.

A big thank you to the PPI volunteers that came along! If you’d be interested in attending training like this, or have any other suggestions for how we can support you in your role as a PPI volunteer, email us at

Grant success: involvement makes all the difference

Earlier this year Esther Sammler, a researcher and clinician at the University of Dundee, was awarded a small grant of £49,270 from Parkinson’s UK. The first time Esther applied for a grant for this project she was unsuccessful. Whilst the scientific review panel were positive about this initial proposal, the feedback from the panel of people affected by Parkinson’s was not at all favourable.

Before applying a second time, Esther worked with someone affected by Parkinson’s to write the lay summary for the proposal. Esther describes the effect of involvement on her application:

…the main difference between the previous unsuccessful and now successful application was that the lay summary of my proposal was heavily edited by a person affected by Parkinson’s. This made my application much stronger and hence successful. For this I am very grateful.

How has this changed my subsequent research studies? I think change often comes in small steps and the main change is that people with the condition but also their families and loved ones — more and more develop into the role of “partners in crime”.

In any future grant application, I will now make it my first priority to pitch my research proposal to people affected by Parkinson’s, who are in the end the most important stakeholders.

Esther and her team are trying to validate a simple blood test that may be able to directly measure the activity of the LRRK2 pathway. Changes in the LRRK2 gene are one of the most common genetic risk factors for Parkinson’s. Demonstrating that the test works could aid future research to test new treatments that target this pathway.

Parkinson’s UK Research Roadshows: York and Durham

The Research Roadshows are regional events designed to bring together people affected by Parkinson’s and local researchers to share information and discuss the latest developments in Parkinson’s research. The roadshow visited York in July and Durham in September.

As well as a series of presentations in the morning, attendees had the chance to hear from researchers in smaller groups in the ‘roundtable discussion’ sessions. Whilst this falls under the banner of engagement rather than involvement, some of the researchers used this time to ask attendees for their feedback about their research plans.

Jason Connolly, a researcher at Durham University, spoke about his plans to develop a brain-computer interface to help people with Parkinson’s to carry out daily activities, such as answering the phone or operating the television. Jason found the feedback from people affected by Parkinson’s really useful, and will use the comments to help him write his application for funding.

People with Parkinson’s requested an unobtrusive wearable device. This was very important to them that the device not be too cumbersome and will become a crucial component of the grant application.

Shaping a proposed new clinical trial in Parkinson’s

In June we facilitated a workshop with a pharmaceutical company and some PPI volunteers. The pharmaceutical company are currently planning a clinical trial for early Parkinson’s, and wanted to consult people affected by Parkinson’s on the design of the trial.

PPI volunteers shared their experiences with the research team, commenting on aspects of the study design such as methods for taking blood samples, the number and frequency of brain scans and the use of wearable devices.

As well as providing useful insights to the pharmaceutical company, people affected by Parkinson’s felt the day was a positive experience:

“I can’t think of many good things to say about having Parkinson’s…but…I find it extremely empowering to attend something like this.”

“A fascinating insight into the complexities of developing a new drug.”

“I felt more confident after the workshop in participating in clinical trial research.”

We’ll be sharing more about this workshop in the new year, so keep an eye out for updates!

EUPATI training day

Over the last few months, we have been working with EUPATI UK to develop a one-day training course on how people affected by health conditions can work with researchers to develop new medicines.

EUPATI, which stands for European Patients’ Academy on Therapeutic Innovation, is a European initiative focused on providing education and training to help patients understand and contribute to medicines research and development. Watch this video to learn more about EUPATI.

The first training session took place in London on 12th November. One of our volunteers, Paul, presented in the second session about his experience of involvement, and four other Parkinson’s UK patient and public involvement volunteers also attended.

Paul, Arthur, Paula, Andy and Penelope at the London EUPATI mini-course

We received some great feedback from the session, along with suggestions for things we could do to improve the training in the future:

“Valuable to have real life examples of those who really have persisted and have achieved so much.”

“I gained a greater appreciation of the importance of involving patients in the research process, particularly early on in the disease process.”

Two further training days are planned in Leeds and Glasgow in November, with several more Parkinson’s UK volunteers attending.

We’re currently thinking about how we can incorporate some of EUPATI’s resources into our programme, so watch this space for more information!

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

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

Annie Amjad

Written by

Research Involvement @ParkinsonsUK

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

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