https://orcid.org/0000-0002-2292-8737
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Abstract
Social innovation initiatives in the pharmaceutical field seek alternative, collaborative ways to address problems with availability and affordability of medicines. However, these experimental initiatives require legitimacy. Formulating goals is a way of creating and contesting legitimacy, also for social innovation initiatives, yet has not been studied in this context. Based on document analysis (policy reports, news articles and websites) and semi-structured interviews, we investigate what form and role goal formulations take in constructing and contesting the legitimacy of two Dutch social innovation initiatives: one novel coverage arrangement for a rare disease drug and one new manufacturing process for a personalised cancer treatment. We find that actors formulate goals to manage consensus with powerful, independent governance bodies and with those who reserve their judgement concerning the initiative. They also manage differences, highlighting role differentiation within collaborations and emphasising contrasts with outsiders. These findings show the importance of professional identities and the experimental nature of social innovation initiatives. We conclude that formulating goals is used to probe for and attempt to ensure the longevity of social innovation. Working together in diverse partnerships for ‘the greater goods’ (plural) is thus essential for organising durable social innovation in the European pharmaceutical field .
Data availability statement
Anonymised interview data will be made available upon request to protect the identity of the interviewees. All analysed documents are available online.
Acknowledgements
We are grateful to all our interviewees for sharing their experiences, thoughts, and feedback with us. We are also indebted to colleagues at the Innovation Sciences section, Utrecht University, the international Social Pharmaceutical Innovation for Unmet Medical Needs team, and many other colleagues ‘outside’ for their constructive input along the way.
Disclosure statement
No potential conflict of interest was reported by the authors.
Geolocation information
Data collection and analysis took place in the Netherlands.
Additional information
Funding
Notes on contributors
T.H. Kleinhout-Vliek
Tineke Kleinhout-Vliek researches how people seek to impact the accessibility, availability, and affordability of pharmaceuticals and other health care technologies. She is interested in people’s argumentations, stories, and actions, how these interact in particular settings, and what the effects are. Tineke holds a PhD in Health Care Governance from Erasmus University Rotterdam, for which she examined the societal weighing of reimbursement decisions using insights from Science and Technology Studies literature. Tineke works as a Postdoctoral Researcher on Social Pharmaceutical Innovation for Unmet Medical Needs (SPIN) at the Copernicus Institute of Sustainable Development, Utrecht University.
W.P.C. Boon
Wouter Boon focuses on the dynamics and governance of emerging technologies in science-based sectors, such as life sciences and health care. The theoretical focus of his work is on transition studies, user innovations, user-producer interactions, user and patient involvement, market formation, and stakeholder engagement in emerging technology fields. In this context he conducted research projects on innovation in the context of rare diseases, socio-technical embedding of emerging health technologies regulation of pharmaceutical and medical device products, and public-private partnerships in R&D programmes aimed at the grand challenges.
R.P. Hagendijk
Rob Hagendijk investigates the dynamics of politics and policymaking concerning rare diseases and innovative orphan drugs in Europe and the Netherlands. The dynamics are especially visible in attempts at reconfiguring the institutional boundaries between market and state, public and private in social life, including the struggles about relevant values, norms and technical and administrative regulations for collective health provisions. He studies these dynamics drawing from his research experience in figuration sociology, social theory and co-productionist STS.
J. Hoekman
Jarno Hoekman’s research focuses on the dynamics of science and science-based innovations in the area of health and sustainability. Jarno holds a PhD in science, technology and innovation studies from Eindhoven University of Technology and is currently working as an associate professor at the Copernicus Institute of Sustainable Development, Utrecht University. In his current research projects he studies amongst others relations between science, innovation and regulation in the life-sciences sector, innovations in environmental and human health risk assessment, issues relating to responsible conduct of research, and the changing organisation of scientific knowledge production with a focus on open science and science-society relations.
E.H.M. Moors
Ellen Moors is Professor of Innovation and Sustainability and head of the Copernicus Institute of Sustainable Development, Utrecht University. Her research focuses on the dynamics and governance of socio-technological innovations, using innovation systems, institutional entrepreneurship and user-innovation theories. She studies how successful innovations increasingly ask for legitimation, institutionalisation and co-creation with users. She has published on the dynamics of socio-technical innovations, user-producer interactions, innovation-regulation issues, and responsible research and innovation in the fields of health, ageing, life sciences, food and community-supported agriculture. She is member of the Dutch Advisory Board for Science, Technology and Innovation, advising Dutch government and parliament.