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.
Jamie Gold has a strong interest in vaccine communication and youth engagement. Drawing on both personal experience and public engagement work, he highlights the importance of clear communication, better diagnostics, and the role of lived experience in shaping immunology research.
You have experience in public involvement, particularly around young people and vaccination. What drew you to this area?
I was on the youth board for an NHS trust, previously Southern Health, which after a merger is now called Hampshire and Isle of Wight Healthcare NHS Foundation Trust.
We were having discussions about what projects we could do in the next academic year, as every year there’s recruitment of new members and ideas for projects. In that meeting, I brought up the idea of looking at vaccines, particularly those that teenagers typically get at school.
That was partially driven by the fact that it had recently been the COVID pandemic, and there’s been a lot of misinformation about vaccines, both the COVID vaccine and others. That has also trickled into perceptions of vaccines that teenagers get at school and reduced uptake.
I thought that by improving communication about these vaccines, we could hopefully increase uptake back to pre-COVID levels and reassure people that vaccines are safe, effective, and nothing to be worried about.
What do you think are the biggest challenges around engaging young people in vaccines?
I think it’s the balance between scientific accuracy and ease of understanding. The immune system is incredibly complex, and it’s hard to simplify.
With young people, especially around age 13 or 14, they might not have had much education on the immune system yet, so things need to be explained in a way that’s easy to understand.
One of the things we were quite keen on was having more communication about what ingredients are actually in vaccines and how they work. We thought that could be quite powerful in countering misinformation and reassuring people that the ingredients are there for a reason and are safe at the concentrations used.
Some ingredients sound quite chemical and can sound scary, but they are there for a purpose. For example, in the three in one booster that teenagers get, one brand contains aluminium hydroxide, which helps make the vaccine more effective.
By explaining things like that, people aren’t as scared by the ingredients and feel more empowered to make a decision about vaccination.
If you could say one thing to immunologists or researchers about the value of patient and public voices, what would that be?
People have a lot of ideas that come from their lived experience. They may notice things that correlate that aren’t discussed in research but would be interesting to investigate.
Obviously, just because something is a noticeable correlation doesn’t mean there is causation, but it can still be an interesting direction to explore.
There’s also increasing recognition in immunology of links between conditions, for example how having one autoimmune disease can predispose someone to another.
People are keen to share their ideas and contribute. I’m very eager to know about current research, but there can be a lag between research being done, being published, and then reaching the public. Sometimes that gap is quite long.
Have you had a moment where you felt particularly heard or represented in research or healthcare?
I had the experience of being a participant on a clinical trial, and overall it was quite a good experience.
I had lots of conversations with one of the doctors and we talked about my experiences as well as how she would design the trial. We discussed things like how participants are classified and subgroup analyses, which was really interesting.
I felt respected for my time and for taking part, whether that was attending visits or giving blood samples. I felt genuinely appreciated and not taken for granted.
I also see that more generally across science. I went to the Oxford Immunology Symposium, and in most presentations one of the final slides was thanking participants. That recognition felt quite significant.
I think immunology and medicine more widely are quite good at recognising participants, and I’m glad it is going in that direction.
Are there areas where patient perspectives could be better understood?
Going back to vaccines, I think there needs to be more understanding of vaccine hesitancy.
As much as there is misinformation about vaccines, there is also misinformation about why people are hesitant. Not everyone who is hesitant is a conspiracy theorist. Some people have genuine fears, such as past negative experiences with healthcare or previous side effects.
It’s important to understand those reasons on an individual level and work with people to see if those fears can be addressed or consider what could be done better to prevent those fears from developing in the first place.
What can be missed when research is designed without patient or public involvement?
The impact of symptoms on everyday life can be missed.
There can be a strong focus on what can be measured, such as specific biomarkers, but those don’t always reflect how someone actually feels. Someone might have results that appear normal but still experience symptoms that affect their daily life.
Tests are not perfect, and there will always be patients whose experiences are not fully captured. We need better biomarkers, but also an understanding that not everything can currently be measured.
What motivated you to join the BSI Patient and Public Involvement Network?
It’s a mixture of factors.
I’ve been really interested in immunology, and since the BSI is one of the leading organisations in that field, I thought it would be important to get involved.
Also, from my experiences on a clinical trial and working on communication around vaccines, I want other people to have those positive experiences. I want people who take part in research to feel like their time is valued and that they’ve contributed to science.
More generally, I just want to make small improvements and provide feedback where I can.
Would you like to share how immunology connects to your own life?
I have asthma, which developed when I was 17. It was a stressful time, as it happened while I was applying to university, and it still affects me now alongside some other respiratory issues.
The clinical trial I was on was looking into asthma diagnostics and validating new tests. I joined while there was still uncertainty about my diagnosis. I have a specific phenotype of asthma that is quite hard to detect. The results of tests like blood eosinophil count or fraction exhaled nitric oxide (FeNO), a test detecting a specific type of inflammation in the airways, are within the normal range for me, so I had to go through more tests to get a clear diagnosis.
At times, this was frustrating, as I was still experiencing regular symptoms despite some tests having results that were normal and being told that the results were reassuring. My experience highlights the need for better diagnostics. There are still gaps in identifying certain phenotypes, and treatment options can be limited for those cases.
What do you wish more people understood about immune-related conditions?
They can have impacts beyond their traditional symptoms. Fatigue is a major one across many conditions, but it isn’t always recognised as a primary symptom even though it can be very significant. Also, just because test results look normal, it doesn’t necessarily mean everything is fine.
There are still conditions and phenotypes that are not well captured by current tests. There is ongoing work to develop better diagnostics, but it will take time before those are widely available in clinical settings.
Are there any voices you would like to see better represented in research?
Children and young people. A lot of conditions affect children, but involving them in research can be more complex, especially around consent and how procedures might affect them. There needs to be careful consideration of what is appropriate.
More broadly, it’s important to include a diverse range of people that reflects the population affected, including carers and those around them.
What topics do you think deserve more attention in future research?
More focus on disease phenotypes and how they affect treatment. At the moment, there is often a degree of trial and error when it comes to treatment. It would be beneficial if we could better predict which treatments will work for which patients, so that people are not left trying multiple options while still unwell. This is an ongoing area of research, and I would like to see more of it.
What would you say to someone considering getting involved in PPI?
It’s for everyone. No matter your experiences, you have something to contribute. Even if you feel like you don’t have much to say at first, it’s valuable to be involved and learn about what’s going on. You don’t need an academic background. These spaces are designed to be accessible for a lay audience. People aren’t expecting experts, just people with perspectives and experiences to share.