My name is Simon and I am not an academic. Nonetheless, I was asked to attend the recent Centre for Biomedical Modelling and Analysis Seed Corn funding incubator event. I attended the incubator event as a MAGPIE. To understand the meaning of this and why I was asked to attend, one must first understand the role, and need for, MAGPIEs. MAGPIE stands for Modelling Advisory Group, Public Involvement and Engagement. The public are a vital stakeholder within medical research. Any medical research is, by its very nature, undertaken to benefit members of the public.
As a research University, the University of Exeter understands that to make a positive impact on the lives of people with health conditions, they must first understand the areas of concern which affect the lives of people living with these conditions. For example, I suffer with epilepsy. There is a natural assumption that the main concerns for anyone living with epilepsy is the treatment of the seizures themselves. However, through engaging with the public, researchers at the EPSRC-funded Centre for Predictive Modelling in Healthcare (CPMH) began to understand that this wasn’t the primary need of the patients. The focus needed to be centred more heavily on faster, more accurate diagnosis and the development of treatments with fewer unpleasant side effects.
My role as a MAGPIE at the seed corn incubator event was to challenge researchers to think about how they will engage with the public and, more specifically, how they will engage with people with lived experience to ensure their concerns are a priority. The difficulty for many researchers is making their research accessible to those who haven’t spent a lifetime working in a clinical or academic background. There is a particular set of terminology around each medical condition which is not immediately transparent to those suffering with the condition or the general public. To make their research understandable and relevant to the general public, researchers are challenged to write their lay summaries in a way which removes any technical terms and defines their research in a manner accessible to as broad an audience as possible. Myself and other MAGPIEs provided comments on the research team’s lay summaries to help make them more accessible.
Beyond their terminology, researchers are encouraged to look at how they can involve members of the public in their research, whether that be through focus groups, questionnaires, videos or lived experience groups. This is vital to ensure that researchers focus on the areas most important to the very stakeholders their research is designed to help. Ultimately, without an understanding of what is important to the people we are trying to help, research becomes less relevant. What is the good in spending time, money and effort developing something which no one knows about, they don’t want and cannot access?
I should confess that, when I was first invited to attend the event, I was somewhat nervous – not because I did not feel I was capable of fulfilling the role, but because I wasn’t sure how useful I would be. With little academic background, I was unsure how much I would understand. As it turned out, that was exactly the point! To make research accessible to the general public, there is a need to ensure it is understandable – that people with little or no academic background can understand and appreciate how research might affect them. At the close of the event I was extremely excited about the research projects and the positive effect it could have on people. I am delighted to have been a part of it. I now look forward to seeing how these projects progress and the effect it can have moving forward.
