Patient engagement in drug development: configuring a new resource for generating innovation

ABSTRACT

This paper focuses on the recent interest in patient engagement (PE) in drug development, expressed in the growing number of calls for engagement, novel organizations dedicated to changing the culture of drug development, and guidelines for directing and evaluating PE. By reviewing materials produced by actors in the field and analyzing publications reporting on PE initiatives, I map sites of action where PE is being conceived and practiced, delineate how PE is being shaped, and analyze relationships emerging within and around the collectives involved. Pharmaceutical industry players actively mold the landscape of PE in drug development through creating tools and frameworks for PE. These instruments for guiding the implementation of PE are disseminated via training and dedicated events, concurrently disseminating a particular configuration of PE. PE emerges as an attempt to open new avenues for increasing productivity amidst concerns about the future of drug innovation, while PE practices fit smoothly into the arrangements for producing and distributing pharmaceutical knowledge largely shaped by the industry. The ongoing participatory turn in drug development is taking place without shifting the established concentration of epistemic power among commercial entities.

KEYWORDS:

• Patient engagement
• drug development
• pharmaceuticals

Acknowledgements

I thank Constanța Craveț for developing the search strategy, performing the literature search and selection, extracting the data, and being such an invaluable research partner; Klasien Horstman and Gabriel Campbell for reviewing drafts of this manuscript and providing comments that clarified my thinking and writing; and all members of the InPart team for numerous critical and inspiring discussions.

Disclosure statement

No potential conflict of interest was reported by the author.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/09581596.2023.2188140.

Additional information

Funding

The work was supported by the H2020 European Research Council [948073].