The trials of designing communication aids for clinical trials: challenges and recommendations from practicing co-design in the domain of medical research

This paper reports on the co-design of data comics for participants in clinical research trials and reflects on the specific challenges encountered when working in this design space. The data comics aimed to aid the communication of medical test results collected during the trial to individual study participants in a simple and understandable way. However, navigating the complexities, uncertainties and constraints associated with the clinical trial environment required adaptation to the co-design process. Over 14 months we co-designed a set of comics, overcoming a unique combination of challenges associated with designing in the context of a clinical research trial, such as strict ethical and legal frameworks, complex data and ongoing uncertainty. Reflecting upon the process, we identify several recurring challenges. Based on these challenges we give guidance on negotiating the constrained and uncertain design space of a clinical trial, with design method considerations that apply beyond this domain.