Social pharmaceutical innovation (SPIN): A sensitizing concept for challenges in rare diseases

Conor M. W. Douglas, Tineke Kleinhout-Vliek, Rob Hagendijk, Wouter Boon, Claudio Cordovil Oliveira, Ellen Moors, Shir Grunebaum and Fernando Aith

Chapter 7 in Handbook of Pharmaceutical Science and Technology Studies, 2026, pp 110-130 from Edward Elgar Publishing

Abstract: The currently dominant model of pharmaceutical innovation faces substantial limitations, particularly for rare diseases. Even when therapies are available, issues of accessibility and affordability persist, underscoring systemic inequities. We mobilize social innovation scholarship to make sense of initiatives addressing these challenges, which we have termed “social pharmaceutical innovation” (or SPIN). By way of case study research from Brazil, Canada, and the Netherlands, we show how innovation is re-organized, bringing different actors into the innovation process, and redistributing roles and responsibilities to make more treatments available. We uncover how data production on treatments is shifting out of the exclusive hands of companies and into clinicians who can use it to make the right treatments accessible at the right time and for the right prices. The malleability of pharmaceutical markets is also exemplified by cases where public sector actors engage in the production of treatments to make them more affordable. We position SPIN as a “sensitizing concept” that helps us understand our cases and guide future research in pharmaceutical innovation. We argue that SPIN demonstrates that other modes of pharmaceutical innovation are possible, and provides a discursive function in naming and stitching together these initiatives, thereby building communities to advance them.

Keywords: Social innovation; Social pharmaceutical innovation; Rare diseases; Public sector innovation; Patient participation; Socio-technical networks (search for similar items in EconPapers)
Date: 2026
ISBN: 9781035338443
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