Gaynor’s role in new diabetes research exhibition
A new exhibition from the University of Oxford features work from people with diabetes reflecting on their experience during the COVID-19 pandemic. Diabetes during COVID-19: capturing experiences of a pandemic features 26 online submissions and two physical artworks that will be displayed at a range of locations. Gaynor Allen is an NIHR Research Champion, a programme that supports people to promote research. Gaynor, who has type 1 diabetes, was involved in the development of the exhibition, which also features her prose work and three word clouds describing her experience of living with diabetes during the pandemic.
I do not consider myself to be particularly creative yet I had no hesitation in taking up the challenge when asked to be a patient co-applicant and team member for the research project. I liked the idea that this project gave people living with or affected by diabetes a voice and a platform on which to share their lived experience. For me, it offered the opportunity to raise awareness of the nature and often overwhelming challenges faced by those who, like me, have type 1 diabetes, although submissions were welcomed from people affected by any form of the condition. We are not alone in our experiences and sentiments shared via the project’s physical and digital exhibitions will, undoubtedly, also resonate with others who are clinically vulnerable. Health research is not just about the clinical, it is also about recognising, empathising with and learning from the experiences of people as demonstrated in this project.
I first became involved in health research about a decade ago and, initially, this took the form of me being a participant in various studies linked to my personal health conditions and illnesses. It has evolved from there and, as a Research Champion for the NIHR and patient panel member at my local diabetes unit, I often receive information about, and have been able to take up, opportunities to support research in other ways. My involvement as a co-applicant in this project is one such example.
I have been involved in the project through all its phases – from obtaining funding approval, through to post-project evaluation. The process has been one of ongoing electronic consultation and collaborative decision-making of the whole team, made up of healthcare providers, researchers and artists, as well as myself as a person living with diabetes. Throughout, I have been struck by the genuine desire and willingness of the professional team members to learn more from the experiences of patients and I have felt integral to the process and welcomed as a team member.
For me, patient involvement in health research is about helping to bring about progress. It is about learning more about one’s own health and well-being and also about giving something back. Above all, it is about hope.
Are you a member of the public who is passionate about promoting health research? Become an NIHR Research Champion to spread the word. Visit the NIHR website to learn more.