The Involvement Steering Group

In this article we discuss what the Involvement Steering Group is, what the group does, and what members of the steering group are looking forward to next.

Published in

Patient and Public Involvement at Parkinson's UK

3 min readApr 18, 2024

Patient and Public Involvement (PPI) is when researchers and people affected by conditions work in partnership to plan, design, implement, manage, evaluate and share research.

What is the Involvement Steering Group?

The Involvement Steering Group, or ISG, is a vital part of the Parkinson’s UK patient and public involvement programme. It was first set up in 2015 to inform and prioritise how we support researchers and members of the Parkinson’s community to work together on Parkinson’s research. It aims to drive forward and support increased, meaningful PPI in Parkinson’s research.

The ISG is made up of people affected by Parkinson’s, researchers and Parkinson’s UK staff. Members bring different perspectives and experiences — not only of Parkinson’s and of research — but we also have different skills and interests that help us work together as a team.

We meet once a month for 1.5–2 hours. Normally via Zoom, but we try to meet up face to face at least once a year.

An image of a hybrid meeting. There are three screens. On the left is a meeting room. 9 people sit around a table smiling at a camera. On the top right is a picture of one of the ISG members who has dialled in from home, and the bottom right also has a picture of an ISG member who has dialled in from home. Everyone is smiling — Members of the ISG at a hybrid meeting in March 2024

What has the ISG done?

The ISG has shaped the PPI programme at Parkinson’s UK since its inception. We work together to make sure that the PPI programme meets the needs of all relevant stakeholders, including the Parkinson’s community and researchers.

We’ve done a lot since the ISG was set up, some of the highlights include:

Creating the PPI contributor role where people affected by Parkinson’s work alongside researchers to design and shape vital Parkinson’s research
Developing PPI training for people affected by Parkinson’s and researchers
Creating resources to help researchers run impactful and inclusive PPI activities
Setting priorities for how the Research Involvement team at Parkinson’s UK develops the patient and public involvement programme. For example, how they support PPI in lab based research and improving the diversity of Parkinson’s research
Shaping the Research Involvement team’s approach to working with Pharmaceutical companies

What are ISG members most proud of?

Quotes from Laura Jacobs, Gary Copitch and Anne Ferrett ISG members. Gary says: It has been a pleasure working with the people with that lived experience and researchers in a unique team which is challenging assumptions and supporting involvement in research. Anne says: It is wonderful that what started in 2015 has developed into such an amazing programme that has had such a big impact on how research has developed. Laura thanks ISG members past and present for their expertise and passion

What’s next for the ISG?

We recently set new priorities which will shape the work that we’re doing until 2026.

An infographic of our 3 priority areas. The priorities are: Increasing the diversity of members of the PPI contributor network. Embedding PPI culture early in the research career. Evaluating PPI in the Parkinson’s UK research grants scheme and in the PPI programme

The priorities are ambitious and we are working in smaller subgroups to work on them outside of ISG meetings. This helps us give the time needed to drive forward and deliver on each priority.

Quote from ISG member and researcher Megan Courtman. She says: I am particularly proud of the work the ISG is doing to embed PPI early in research careers. There are many different routes to Parkinson’s research, and the ISG is taking on an important and challenging task in reaching researchers early in those journeys.

We’ll keep you updated on where we’re at with our priorities and opportunities to get involved as we go.

Are you a member of the Parkinson’s community looking to help shape research? Get in touch at researchinvolvement@parkinsons.org.uk, or visit the PPI contributors page on our website.

Are you a researcher looking for involvement support? Get in touch at researchinvolvement@parkinson.org.uk. Or go to our website to see the support we can offer and fill in our PPI Support Request Form.