Standardising Patient Engagement in Drug Development: The Emerging, yet Already Noteworthy Case of Patient Focused Medicines Development (PFMD) and its Materials

Abstract

Initiatives to increase patient engagement in drug development have recently been accompanied by growing calls for standardisation due to considerable uncertainties about how to best perform patient engagement and use it in drug marketing applications. We focus on materials developed by the Patient Focused Medicines Development (PFMD), a multi-stakeholder group founded in 2015, and investigate what these materials seek to standardize on patient engagement in drug development and what visions of patient engagement are being constructed by them. We take a material-semiotic approach, whereby the materials analysed are seen as influential actors, which can work upon and transform issues of concern. The findings indicate that these materials seek to standardise a new beginning for the drug development trajectory, which they (re)locate to the patients’ needs and preferences, and long-term relationships between researchers and patients developed through specific methods. A new type of patient is thus envisioned, while researchers and patient organisations are ascribed more complex roles.