Bridging a gap

Abstract

There has been a quiet revolution in UK medical charities over the past two decades. Increasing competition for donations, adoption of new roles relative to the state and private sectors, and the requirement for more accountability have all played their part in the movement away from a total reliance on volunteers to a greater use of professional expertise — not only in media relations and fund-raising, but also in the communication of science.Since the recent comment in Nature on sexism and nepotism in science, previously unspoken reasons for my (and no doubt many others') leaving academia have become an acceptable topic for after-dinner conversation; this article presents some of my story. Like many people, I had reached the stage in an academic career when short-term grants were no longer acceptable or secure enough, but tenure seemed an elusive goal. As an immunologist with a clinical bias, I took an unusual career decision and became Research Liaison Officer for the UK's Multiple Sclerosis Society.Biomedical research funding in the UK is more reliant than ever on charity money. The 99 charities belonging to the Association of Medical Research Charities fund more biomedical research than the government's Medical Research Council. These charities have a major role to play not only in funding research, but also in influencing its direction. In the UK, the Wellcome Trust funds the lion's share, but other charities can have a huge impact, often funding the majority of research in one particular area.Along with the need to account for how money is spent on medical research, there has been a clamouring by donors and lay audiences for more meaningful information about the science ‘their charity’ is funding. For many charities, particularly those that are patient-based or relate to a specific disease, ‘public understanding of science’ has become a major focus. In response to these changes, several medical research charities now employ scientists on their staff.Although the move to an office comes gradually to most academics in the course of their career, the decision to leave the lab and look after the research investment of a high-profile charity is a large jump to make. The return route is difficult, if not impossible, at least partly for personal reasons: charity work is less synonymous with low pay than it used to be, and the emotional rewards can be immeasurable.Despite the popular view, charitable research administration involves more than invoices and grant applications. It is also about public relations, interpretation and information about science, as well as policy, strategy and fund-raising. Leaving your own personal research agenda behind has its own rewards — by stepping back, one can gain a broad view of a field in its entirety. The range of contacts also widens, in my case to include people with multiple sclerosis from all walks of life, as well as health-care professionals, scientists, and people in industry, politics and public relations.Charitable research funders have always been responsive to researchers' ideas, but there is increasingly a fundamental change in attitude: in order to nurture their investment, charities are no longer relying solely on researchers for direction; instead they strategically plan how to get the best impact. Debates rage over the respective importance of people versus places; centres versus individual investigators; career and training versus project grants; innovation versus guaranteed results. Funders with finite resources have hard decisions to make.All scientists these days need to explain their work in accessible and realistic terms. Increasingly, funders are asking grant applicants for lay summaries, which provide a start in training researchers to explain their work in simple terms. The trend by scientists towards using the media is also increasing. But because few scientists are used to dealing with the media, they are often surprised by the public reaction. Writing, speaking and broadcasting about multiple sclerosis research for an audience of non-scientists is one challenging part of my job. The balance of making science exciting and meaningful but not promising ‘breakthroughs’ and ‘cures’ is hard to get right, particularly when trying to raise money. Raising false hopes is not only unfair on people living with an illness for which there is no current satisfactory treatment, but also, when promises are not fulfilled, results in disillusionment with science and scientists.Because conventional science and medicine cannot always meet the needs of people with long-term conditions, patients increasingly experience a chasm between expectation and delivery. The most common criticism I hear is that the needs of people with the disease are not being addressed by biomedical research. So, another aspect of my role is to try and bridge the gap between researchers and people with multiple sclerosis. It's a long way from planning my own finite research project, so was it a good move? Absolutely.