Exploring Vocabularies of Motive to Optimise Patient Engagement for Drug Development

Patient engagement in the drug development life cycle is becoming normalised, and the return on investment is being quantified. We sought to understand what motivates biotechnology organisations to undertake patient engagement throughout the drug development life cycle, to enable us to generate theoretically and empirically grounded knowledge to optimise patient engagement. This paper draws upon ethnographic research including 200 hours of informal observation, 50 hours of formal observation, 10 interviews with biotechnology staff and documentary analysis. With patient input throughout this research, we identified a multitude of motives for patient engagement, including regulatory requirements, corporate social responsibility and return on investment. Less evident was the translation of those motives into a framework that could optimise patient engagement over time and at scale. This was due to the dynamic nature of the drug pipeline, the limited critical space in which patient engagement can occur and misconceptions about patient engagement mechanisms, incentives and metrics. Exploring existing vocabularies of motive within an industry-led initiative identified organisational practice in both drug development processes and wider industry practices that have the potential to inhibit meaningful and sustainable engagement, and thus limit translation and optimisation of discovery-to-prescription translation for a wider group of patients.