Interview with Stevie Shoop-Worrall, winner of the Inclusive Involvement Excellence Award, Greater Manchester Health and Care Research Awards
Blog by Dr Jo Pennock, Senior Lecturer and Social Responsibility Director for School of Biological Sciences.
In this blog, Dr Jo Pennock interviews Dr Stevie Shoop-Worrall, Career Development Research Fellow, Division of Musculoskeletal & Dermatological Sciences and winner at the Greater Manchester Health and Care Research Awards 2023.
Hi Stevie, congratulations on your award! Could I start by asking you about your role here at the University?
I am a Medical Research Council (MRC) funded epidemiologist and data scientist, currently working on finding clusters of people with psoriatic arthritis who could benefit from different treatments. I am analysing clinical and some biological/genetic data from about 2000 people with psoriatic arthritis across the life course, from seven different countries including data from here in Manchester. I am particularly interested in childhood arthritis which is a disease really lacking in visibility and one that can cause physical disability, intense pain and fatigue which has a huge impact on children’s lives.
How did this project come about?
In 2020 I held a series of discussions with children, young people and adults with psoriatic arthritis, alongside their families and carers about research ideas. We talked about whether they thought stratification of treatments and a life course approach would be helpful for their/their children’s disease, and what the barriers to these might be. I accessed funded groups through the CLUSTER consortium and associated charities, Your Rheum, BANNAR and BritPACT. This was a great way to access networks of people with psoriatic arthritis across the life course and meant I could talk with both children and adults about their views on current treatments and research.
What was the impact of talking to the patients for you?
Well, it isn’t that common to include children in patient involvement, particularly for data scientists. We were able to get both adult and children’s opinions on current treatments and their own treatment needs. For instance, the first main treatment for psoriatic arthritis, Methotrexate, does not work for two thirds of people that take it. Side effects can include debilitating nausea which has a huge impact on both school attendance and socialisation in children as the treatment is given weekly with some parents reporting up to five days of nausea for their children.
There is a strong sense of injustice around this impact particularly when the treatment is not working. There is currently no way of identifying the people who will respond to this treatment. Talking to people with psoriatic arthritis across the life course sparked ideas that directly led to my MRC Career Development Fellowship which was awarded in 2022. It also led to a viewpoint manuscript co-written with young people with arthritis about how to involve children and young people in machine learning research.
Do you still do PPIE as part of your fellowship?
Yes! We are about one year into the fellowship and patients are still involved. Guidelines say that disease models should be selected by researchers based on clinical plausibility, but what does that mean? I have involved people with psoriatic arthritis of all ages in the selection of the significant disease models I have generated, based on their own lived experience.
Do you have any advice for researchers wanting to start patient involvement?
- Take advice! This project was a departure for me as my PhD was on childhood arthritis, but a colleague Dr Katie Druce who leads patient involvement in our centre, was incredibly helpful, particularly for advice on the activities which are involvement and what are actually exploitative. The leads of Your Rheum, Laura Lunt and Vocal’s Susannah Williams – have been brilliant in helping plan activities both for this fellowship and other projects.
- Doing involvement across the life course means running multiple events with lots of different challenges – from managing toddlers and families, to engaging teenagers, adults, and carers. Each of these needs to planned with the particular age group and the medium (online or face to face) in mind. One-on-one sessions are often ideal for adults who are more confident and share opinions more easily. Group sessions (up to around 10) tend to work better for young people, with the added plus that it is often the first time they’ve met someone else with their condition and provides another benefit of taking part.
- When planning events, you must take into account the physical impact of the disease itself; not everyone will be able to complete activities. It is important to have alternatives planned so that everyone can take part, and accessibility of the building or online tools is a must.
- Everyone likes free food! Even if you’re planning an online activity, sending care packages for people to open at home raises morale and engagement in the sessions.
- Many people think that involving children in patient involvement is not beneficial, that they won’t understand research projects. However, we have found that even quite young children do understand data if presented in the right way. For instance, in one activity we asked young people to draw out their own journey, identifying ‘spikes’ of disease activity and events that impacted their progress, both good and bad. These graphical representations of their own journeys made it easier for them to understand the graphs that I shared.
- Feedback. Feedback. Feedback. Get feedback on the sessions you run to make the next ones better. And NEVER forget to let people who have helped know what happened next. Even if the grant was rejected!
Final thoughts from Stevie:
‘’Although involving children does come with challenges, young people in particular really want to contribute and to be heard. I really think that not involving children in PPIE is a huge injustice; we should be aiming for ‘nothing about us without us’. Why should we be planning research that affects people’s lives without their input?’’
Follow Stevie on X (formally Twitter): @sshoopworrall
This award was sponsored by Parexel and presented by Andrew Boden, Parexel’s Associate Director for Site Alliances. Find out more about the award on the NIHR website.