Meet the researchers: An alternative method of engaging patients with research in mesothelioma

Abstract

Background Innovative approaches to engaging people with science exist but are often framed around interactive events or social media technologies. Notwithstanding the availability of novel approaches, many patient support groups and charitable organisations continue to hold traditional meetings and seminars to provide information and updates on their activities, and report on developments in their field of interest. In the case of research-focussed organisations, these meetings often take the form of presentations delivered by clinical experts or research scientists. Observation of mesothelioma patients, their relatives, friends and carers attending scientific or clinical-themed meetings has shown that they can be confused, and sometimes distressed, by presentations. This can be due to didactic presentations that are not properly targeted to this audience and a lack of a general overview or summary at the end of meetings that would provide some simple take home messages. This experience motivated the development of a less formal method of sharing complex information and ideas in a simplified manner. “Meet the Researchers” aims to make researchers accessible to patients in order to raise awareness and understanding of research and to explain how research translates into, and informs practice. This approach encourages the use of plain English, removes the tendency to rely on PowerPoint slides to convey the message and moreover, provides an opportunity for researchers to hear patients’ views. Methods Small groups of participants met face to face with the researchers planning or conducting research into their condition, and discussed the topics in a relaxed and informal way. The researchers spent a minimum of 20-min with each group before moving on to the next. Info-graphics on a portable device or printed hand-outs in plain English were allowed but no formal presentations were made. Results Our method has been evaluated using feedback data from three annual events held from 2016 to 2018: 100% of participants indicated that they liked the format “very much”(76.0%) or “quite a lot”(24.0%); 80.4% found the topics “very interesting” and 75.9% found it “very easy” to ask questions. Free text comments revealed themes of ‘hope’ and ‘altruism’. Researchers also reported benefits from participation such as learning about patient’ priorities and networking. Conclusion “Meet the Researchers” provides a unique opportunity for mesothelioma researchers and patients, relatives and carers to interact on a more equal footing. It stimulates discussion, promotes understanding and provides a more informal setting for non-professional participants to ask questions. It is a format that could easily be adapted for use in other conditions.