“The power imbalance was blown out the window”: developing and implementing creative workshops to enhance communication of statistics in patient and public involvement in clinical trials

Despite the importance of statistical and numerical aspects in key decisions related to clinical trials and their impact in patient’s care, patient and public involvement remains underdeveloped in this field. Communication is a barrier to enable successful involvement of patients and the public in numerical aspects. Treatment important differences, a crucial numerical aspect in trials, is considered a priority for patient and public involvement. Creative methods have been proposed to improve communication of technical concepts with members of the public; and to democratise and improve inclusivity in patient and public involvement in health research. Working with creative professionals, public partners, and statisticians, we aimed to develop, pilot and implement creative workshops to promote a shared understanding of treatment important differences; and co-develop creative prototypes that could be used to communicate the statistical concept to a wider audience in the future. Three 2 to 4 h creative workshops based in the UK were delivered. The first two workshops included 22 participants. They were online and worked as pilots to refine the final in-person workshop via participant feedback and discussion. The final workshop focused on treatment important differences, and we collected information from participants on expectations, subjective numeracy, and experience. The final workshop included 13 participants (5 creative professionals, 4 public partners, and 4 clinical trial statisticians). Participants reported creative workshops helped improve communication of treatment important differences between stakeholders reaching a common understanding of their meaning; and helped democratise knowledge exchange. Each group developed a creative prototype to communicate about treatment important differences with a wider audience, including a song, game, and a cartoon. Participants recommended the format to improve communication of other statistical or complex concepts between stakeholders. Creative workshops can promote shared understanding of complex, statistical concepts and co-development of creative outputs amongst stakeholders. Future work should explore generalisability of the intervention, and what outcomes might be important to consider when implementing creative workshops in patient and public involvement practice. Patient and public involvement in clinical trials helps improve their relevance. Decisions related to numbers in trials consider information related to patients and their clinical experience, but patients and the public are rarely involved in these decisions. One barrier to achieve this is communication: numbers can be challenging to discuss. Creative methods (including writing, dancing, drawing) have been suggested as a potential way to improve communication of numbers with a wide audience. Working with creative professionals, public partners, and statisticians we developed, piloted, and implemented a creative workshop focusing on improving communication by reaching a common understanding between participants of a specific numerical concept related to clinical trials and where patient and public involvement is crucial. The creative workshop aimed to facilitate mutual learning between creative professionals, members of the public, and statisticians; and to promote co-development of creative outputs to describe the same numerical concept to a wider audience. Workshop participants felt the creative workshops improved communication of the numerical concept and helped everyone feel heard. Workshop participants were particularly interested in visual methods to support communication, and recommended creative workshops should be used to improve communication of other statistical and complex concepts.