As biomedical scientists, we often learn of disease solely through academic channels: published research in technical manuscripts, specialised books, and conference talks. However, occasionally we have the opportunity to learn about it from first-hand experience, that is, from people actually living with the condition. Considering my mathematical background, I used to look at diseases as problems to be solved. In a way, I still do, but a few weeks ago I realised how important it is to include a perspective that is often taken for granted: that of the patients.
On August 8th, I had the opportunity to host a Workshop on Hormone Dynamics in Pituitary and Adrenal Systems at the recently opened Living Systems Institute. The event was funded by the University of Exeter’s Engaged Research Exploratory Award, which has the purpose of developing communities between academics and non-academic partners. With the ultimate goal of devising how to better address current challenges in endocrinology through a community effort, the workshop brought together researchers, clinicians, and people with steroid-dependent neuroendocrine conditions such as Addison’s and Cushing’s syndrome. These conditions are related to the dis-regulation of cortisol levels in the body, which is an important steroid hormone behind our ability to respond to stress, regulates normal metabolism (affecting stamina and weight gain), modulates our immune system, and influences mood as well as other cognitive functions. Understanding the regulation of these so-called ‘stress hormones’ is the subject of my research. In our group, we use mathematics to model how important endocrine organs such as the adrenal and pituitary glands control fluctuating levels of cortisol and keep them within healthy levels, something that is disrupted in Addison’s and Cushing’s.
The purpose of the workshop was twofold. Firstly, we wished to communicate to our diverse audience how hormone levels change in time, why considering these changes is key to understanding (and improving) current drug therapies, and what our mathematic oriented research has to do with all this. Secondly, we wanted to establish a dialogue between us, to hear directly from people living with endocrine conditions about the most pressing issues associated with their diagnosis, early vs. current drug therapy, their side effects, emergency care, and in general, priority areas that from their perspective need the most attention to improve their quality of life. Furthermore, we offered them a vision of what’s to come in future research projects, and invited them to provide feedback and consultation on the development of such projects (instead of solely participating as study subjects).
I was happy to see that the event surpassed all expectations. Not only did the audience show a marked interest in having a sneak peek into current and future research, but they were very enthusiastic about being part of it. In particular, they realised how important is to fine tune the dynamic profile of drug administration to improve their wellbeing, and how mathematics can contribute to this. Since further studies are necessary to translate this knowledge into automated drug-delivery systems, having a network of patients, clinicians, and researchers in place is critical to undertake the challenge of collecting pilot data and further developing a biomedical application. For this, I’m very grateful to Prof Stafford Lightman (FRS) at the University of Bristol and Prof John Terry at the University of Exeter, who supported the project from the very beginning, as well as The Pituitary Foundation and the Addison’s Disease Self-Help Group, who are important charities working to raise awareness about pituitary and adrenal related conditions.
Overall, this was a very rewarding experience, and I was lucky to have the opportunity to organise such an event at this early stage of my career. Not only that, but right at the beginning of my 3-year project funded by the Medical Research Council (MRC) through a Skills Development Fellowship, dedicated to develop a mathematical understanding of hormone dynamics. The most valuable lesson I learnt from this engaged research activity is the realisation that no matter how much we read about the symptoms and side effects of a medical condition, it is the patients who are best placed to tell us what their priorities are. Talking to ’experts with lived experience’ can help us tailor our grant applications toward projects that will likely benefit them the most. In other words, it’s not just about bringing hormone dynamics research to the public, but also about bringing the public’s priorities to research. This should be, in my opinion, one of the core values of biomedical science, one that promotes a vision of doing research ‘with’ the public, rather than just ‘about’ the public. In the long run, it also offers a service to the scientific enterprise to not only inform but also engage with the public to appreciate science for what it is: an activity driven by both curiosity and necessity for the benefit of us all, with the participation of us all.