Patient engagement in drug development: dialogically problematizing participation

Abstract

For many years, the field of drug development remained insulated from patient engagement initiatives that became commonplace in healthcare, it is currently experiencing a participatory turn. This has been informed by a re-evaluation of the patients' insights and of the roles they can play in drug development, with both democratising and technocratic arguments invoked in support of their more substantial engagement. This article problematises the democratising potential of drug development through a knowledge co-production process between the authors of this paper - two scholars and two practitioners in this field. It scrutinises what patients can participate in drug development by zooming in on the Patient Expert Training provided by EUPATI, arguably the most influential and reputable patient education provider in Europe currently. Through their dialogue, the authors highlight the considerable epistemic requirements placed upon patients and warn about the risk of the emergence of participatory practices that rely exclusively on a narrow patient elite. They also reflect upon the benefits and challenges of close collaborations between researchers and practitioners and call for the systemic transformations needed for such knowledge co-production initiatives to become commonplace in academia.