Patient and public voices are increasingly shaping the future of immunology, from vaccine confidence to research design and lived experience of illness and infection. In this series, we speak to three members of the BSI Patient and Public Involvement Network to explore how their perspectives are informing research, improving communication and highlighting gaps that science alone cannot capture.
Lucie Dixon shares her perspective on the importance of patient and public involvement (PPI) in immunology research. Drawing on her personal experience of secondary immunodeficiency following cancer treatment, she highlights how lived experience can strengthen research, improve understanding and ensure patient voices are truly heard.
What does patient and public involvement mean to you?
Patient and public involvement, to me, means giving the patient a voice. It helps to bridge the gap between researchers, medics and the patients themselves. I think it’s really important because it allows the people who are actually going through these situations to share their experiences, rather than everything being interpreted solely through research or clinical perspectives. It also helps make research more understandable and accessible to the public, working in both directions.
What would you say to researchers about the value of patient and public voices?
Patient and public involvement provides a perspective that researchers might not understand or might not think of. It brings in a lived experience that can highlight things that wouldn’t otherwise be considered.
Why is PPI important in immunology and medical research?
I think it’s particularly important in immunology because there hasn’t been as much research compared to other areas like cancer. Because of that, patients haven’t necessarily been as involved or had as many opportunities to share their experiences and opinions.
How does immunology connect to your personal life?
I had non-Hodgkin’s lymphoma in 2019, and the chemotherapy I received caused secondary immunodeficiency. Before my diagnosis, I knew nothing about immunodeficiency, I didn’t even realise it could be a side-effect of cancer treatment. That lack of awareness is what led me to get involved in PPI, because there isn’t enough information or public understanding about it.
What motivated you to join the BSI Patient and Public Involvement Network?
My diagnosis took quite a long time, and I experienced repeated infections before finally getting answers. I wanted to use my experience and turn it into something positive that could help other people going through similar situations.
What can be missed when research is done without patient input?
One of the biggest things that can be missed is the psychological impact; things like fatigue, anxiety about infections and the mental strain of living with a condition. These aspects are more subjective and harder to quantify, but they are a huge part of the experience and can vary significantly between individuals.
What are you hoping to contribute or gain through PPI?
I want to support others who may face similar challenges in the future. As cancer becomes more common, more people are likely to develop secondary immunodeficiency, so sharing my experience could help others feel less alone and better understood. Despite often being seen as rare, it is becoming increasingly common, and greater awareness and representation in research are essential.
What do you wish more people understood about immune disorders?
I wish people understood more about the fatigue and the day-to-day uncertainty. There’s a constant worry about infections, going into crowded places, or needing antibiotics. Even when someone looks well from the outside, it can be an invisible illness. There’s often a lot of underlying anxiety that people don’t see.
How could organisations better involve people in these conversations?
PPI is a great way to involve people, but organisations could reach further. In my case, I only found out about these opportunities because I actively searched for them. More recognition, better promotion and possibly greater involvement from organisations like the NHS in sharing opportunities could help more people get involved. Social media is really important. It’s where most people access information – nearly everyone is on some form of social media – so I think that's a good opportunity to raise awareness and engagement.
What advice would you give to someone considering joining PPI?
It’s really rewarding and flexible. There’s no pressure to contribute if you can’t, you can be involved as much or as little as suits you. People are very understanding, especially if your personal circumstances or health change, so it’s something you can adapt around your life.
Where do you think patient voices are sometimes overlooked?
In my experience, particularly in hospital settings. It took a long time for me to get diagnosed, and I really had to push to be heard. Hopefully, involvement in PPI can help improve understanding among clinicians and lead to faster diagnoses in the future.
Why is diversity of experience important in PPI?
I think it’s really important because, depending on your social and geographical background, your experience can be completely different, including the type of care you receive and the experiences you have. That’s why it’s so valuable to have a range of perspectives represented. For example, I come from the north and from a rural village, so my experiences are likely to be very different from someone living in London, where a hospital is serving a much larger and more diverse catchment area. Those differences can have a big impact, so it’s essential to make sure they’re all reflected.
How can researchers better support patients and the public?
Researchers need to recognise that it’s not just about physical symptoms. It’s about understanding the patient as a whole person, including the psychological impact. Taking a more holistic approach would make a big difference.
What does great PPI look like to you?
Great PPI would include a diverse range of people and ensure that everyone has the opportunity to speak, be heard, and have their contributions listened to, and importantly, acted upon.
Interview by Georgia Tromans
You can catch up on our interview with BSI PPI Network member, Jamie Gold, in our summer issue.