The value of Patient and Public Involvement: a student's perspective
Julia Salafranca Gomez, DPhil student at the Kennedy Institute of Rheumatology, studies the role of neutrophils in rheumatic conditions and how their functions are changed in disease. As neutrophils are present in many inflammatory conditions, understanding these specialised white blood cells could result in the development of new therapeutic targets. Julia is also an advocate for the value of patient and public involvement (PPI) in research. In this interview, Julia talks about how patient perspectives can shape research strategy in the direction most meaningful to patients and can help DPhil students communicate their research in an accessible way. Julia discusses how involving patients and the public in her research has given her a well-rounded DPhil experience and motivates her to explore new treatment avenues for life-altering inflammatory diseases.
Q: Hi Julia, what kind of patient and public involvement (PPI) projects are you involved with?
A: Hi! I am involved in three main projects involving patients and the public. The first is the Kennedy Patient Partner Group (KPPG), a group of patients and researchers who meet regularly to make sure we take patient perspectives into account in how we carry out and communicate research. The other two are my projects supported by the PER Innovation Fund. The first of these projects aims to raise awareness of rheumatology research at the Kennedy through public engagement events. The second project engages young people living with rheumatic disease in discussions about research – let’s talk about that one and the KPPG project today.
Q: Why have you chosen to get involved in these projects?
A: PPI can be valuable for patients but can also improve the relevance of scientific research and how we communicate it. For patients, it can be helpful for understanding their condition and the efforts to research and develop treatments for it. As a DPhil student, it lets me see how the conditions that I study affect people in the real world, making me think about my research from a more human perspective. This means that we do better, more meaningful research, which will improve patient lives in future!
Q: How does patient involvement through groups like the KPPG improve the relevance of scientific research? What kind of decisions can be influenced in this way?
A: In my own experience, patient involvement groups can be extremely helpful to take a step back and rethink the relevance of your project. Sometimes scientists can get so wrapped up in doing experiments, analysing the data and getting results that we lose track of our goals and the bigger picture. Having to explain your project to people who are not scientists can raise very interesting questions and points you hadn’t thought about, but also discover any underlying gaps in your knowledge. More generally, patients can be useful in setting research priorities, influencing research plans, for example, regarding treatment development, and helping with grants, as many charities will have patients in their panel.
Q: How can this kind of patient involvement help researchers to communicate their science?
A: It’s important for us to be able to communicate our research in a way that makes sense to the public, ensuring that science (much of which is publicly funded) is accessible to everyone. But when we spend all day in the lab and attending scientific seminars, we can get tied up in the jargon and lose sight of how to talk about our work to non-experts. Patients and members of the public can help us develop lay summaries, abstracts, presentations, and other things in a way that makes sense to them. They can give us feedback and tell us when we are not making sense – that is so valuable!
Q: Moving on, can you tell me about your project with young people who have rheumatological conditions?
A: Absolutely. It came from a realisation that young people with joint and inflammatory conditions are often absent from research discussions. According to the charity Versus Arthritis, there were 2.8 million people under 35 in the UK with a musculoskeletal condition in 2021. Despite this, patient involvement groups are mostly formed of middle-aged women who are usually also white. This means that young people are missing from discussions with researchers about how their condition affects them, and so their voices are not heard.
Q: What does your work with young people involve?
A: I wanted to learn how young people are affected by their conditions, what matters most to them, and how they would like to get involved in research discussions. So I created a workshop and recruited six people aged between 23 and 30. We played some ice-breaker games to get to know each other and then had a more structured discussion about living with their condition and their thoughts about research.
Q: What did you learn from the group about their experiences?
A: I learned so much about how young people are affected by their conditions, their experience with healthcare, and the level of support available to them. I thought that the main issue would be pain, but they told me about the fatigue caused by their medication, how visiting hospital for treatment takes a lot of time out of their schedule, and about the psychological impact of their condition. Young people can struggle to come to terms with needing to take medication for the rest of their lives. They told me about the need for support groups for young people. When they reach 25 years old, young people are grouped with older people who are at a different stage of life and can be harder to relate to.
Q: How did they see themselves getting involved with research?
A: Members of the group were interested in taking an active role in research, and most of them would like to review grant proposals. They would like to attend research meetings and read newsletters about research news, but were less interested in laboratory tours. However, time is a limiting factor and not all participants predicted that they could get involved. Knowing how the group would like to engage with research was so valuable, because we can then do these things rather than making assumptions about what they would want.
Q: How might findings like these influence research decisions?
A: Involving young people with rheumatic conditions in our research makes sure we are taking into account their perspective. Young people have many years of treatment ahead of them, and this can be useful to design new trials and/or interventions. In addition, I think these findings are useful to start a cohort with young people, including activities they are interested in, and sparking meaningful conversations with other young researchers, influencing their research outlook.
Q: Do you have any advice for a DPhil student who is thinking about getting involved in PPI?
A: Patient involvement is not a high-commitment activity, but the output you get from it is a lot more than the effort you have to invest. Having a conversation with a patient isn’t only a great motivation for your work (especially when your PhD is not going as planned), but it will be very helpful to focus your project or help with your presentation or writing skills. The Kennedy Institute has a great support network for scientists interested in PPI, so reach out!
You can find out more about Julia’s PER Innovation Fund projects, including the design and outcomes of her workshop with young people, through her recent blog article.