David Supple is an asthma advocate who chairs the U-BIOPRED Patient Input Platform. In this interview, he talks about the project, how he came to be involved, and his hopes in terms of its legacy.
How did you come to be involved with asthma advocacy?
I became involved in asthma advocacy when my oldest son, Alex, was diagnosed with the condition at quite a young age. As a family, we felt that we should not be a quiet partner when it came to Alex’s condition. We were determined to be positive about his asthma, to know as much as we possibly could about it, to really own it as a condition and to participate in it.
The advocacy journey has been a path of not only understanding yourself and the condition you or the person you care for lives with, but of meeting other people with the condition and learning about the context of it in the wider world. We developed this growing ambition to want to make a change in asthma – either with finding a cure, alleviating people’s symptoms, or helping people become more informed so that they can own their asthma rather than it owning them.
How did this lead to being part of the U-BIOPRED (Unbiased BIOmarkers in PREDiction) project?
I spent 4 very happy years getting involved in research from the patient side with Asthma UK. I learned about how research is conducted, funded, planned, approved, and so on. This led to an opportunity to work on U-BIOPRED, a 5-year project which was looking for patients to help to shape the project from the outset, which was very novel in terms of the research landscape.
At the beginning, it was hard to tell what the end of the project would look like, and how we would be involved. It took a bit of time to get our confidence up when going overseas and meeting eminent professors, but at the back of our heads we always had the other patients and carers whose interests we were there to represent. It was a really grounding rationale for being there; no matter how nervous we were in a particular situation, there were millions of people that were behind us and relying on us.
Could you give a quick introduction to U-BIOPRED and what it set out to achieve?
U-BIOPRED is trying to use novel ways of analysing medical data to look at how asthma differs between people. It is really important to identify this because it is the beginning of the journey towards providing personalised care and medication that can treat your specific type of asthma. Up until now, asthma has been categorised really broadly as mild, moderate or severe, but there are many subtleties in between these which can make the difference between having a really good and supportive care package or not.
The project is about trying to identify how asthma differs between individuals and provide the evidence behind that. At the moment, there are too many question marks about whether a type of treatment is right for a person’s asthma, and I think that this will help to target that to a much greater degree.
What was the role of the Patient Input Platform (PIP) within U-BIOPRED?
Over the 5 years of the project, the role of PIP has changed. At the beginning, it was about trying to frame the research to attract potential participants. This type of research involves repeat visits, so participants needed to build a relationship with it. PIP helped on that basis in a number of ways: improving patient information leaflets and the recruitment approach, and helping everyone working on the research project to understand what it is like to either have asthma or to be caring for someone with it, and what that might mean for repeat visits to clinics.
Now that the project is coming to an end, we are also helping to put the outcomes of the research into language that can be understood by the wider world, and hopefully this will encourage other projects to pick this up.
How was your experience of representing patients on an EU project?
People with asthma have a really unique insight into how it affects them on a daily basis. It was really interesting to go through the journey of understanding lots of people’s different perspectives and experiences of the condition. It was very clear that, at all junctures, we were representing a group of people whose need was real, relevant and, in many cases, unmet right across Europe. We worked tirelessly to make this study remember its rationale and the fact that there are an awful lot of people affected by this condition, and that they are not just based in the more affluent countries within the EU.
As U-BIOPRED draws to a close, what do you hope will be its legacy?
There are a number of legacy aspects to U-BIOPRED. Firstly, I hope that it has demonstrated the fact that engaging with patients can be successful. I think it is fair to say that the research community is a little shy when it comes to engaging patients, and I hope that the hard work that we have put into U-BIOPRED for the last 5 years goes some way to proving the value of patient engagement. I hope that this recognition and belief in patients is carried on to every research project moving forward.
Scientifically, the legacy of U-BIOPRED is to build a platform that other research can build on to make targeted, personalised asthma care and medication more responsive to the needs of people with the condition.
What are your hopes for asthma research in the future?
Alex is 14 now, and I remain convinced that asthma can be cured in his lifetime. Every piece of research that I engage with, that I review, and that I am on panels and committees for, reaffirms that. However, it is important to remember that we cannot take our foot off the gas for this. We need research, funding and engagement to continue so that we can reach that ultimate goal.
Is there anything else you would like to add?
Outside of asthma, I am involved in another big research project looking at systems medicine and how we integrate healthcare across Europe. I want the EU to look at funding research which spans across conditions, because quite often people are not struggling with just one health problem. The cumulative effect and impact on quality of life of these different conditions can sometimes be lost, so I would like to see the EU spending time building on these projects and engaging with patients, but also looking at how multiple conditions affect people.
I would also like to see more research and engagement across the whole of Europe, particularly with overlooked and underrepresented communities. There are a lot of voices out there that need to be heard, and we are not listening to them all.
