Co-design and its consequences: developing a shared patient engagement framework in the IMI-PARADIGM project

Journal article

Whilst patient engagement (PE) activities have become increasingly prevalent in medicines development, collaborating actors have different perspectives of its goals and its added value. In the development of PE standards and frameworks, the significance of these differences tends to be minimized. Boundary objects have been shown to mediate knowledge exchange between multiple social worlds, thereby playing an important role in participatory technology governance processes. In this paper, we draw on boundary objects to learn from the process of co-designing a PE monitoring and evaluation (M&E) framework within the IMI-PARADIGM consortium (2018 – 2020). As facilitators of PARADIGM’s co-design process, we report on the challenges encountered in designing a practicable M&E framework that serves different needs and interests. We argue these challenges of co-design reflect a negotiation of different frames throughout, thereby providing insight into how such work may contribute to addressing the challenge of knowledge integration in institutional medicines development settings.

Authors: Gunn, C; Fruytier, S; Finlay, T; Vat, L; Zuiderent-Jerak, T

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Oxford University Press
• Journal: Science and Public Policy
• Article number: scad040
• Publication date: 2023-08-02
• Acceptance date: 2023-06-21
• DOI: 10.1093/scipol/scad040
• EISSN: 1471-5430
• ISSN: 0302-3427
• Language: English
• Keywords: FFR