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Public participation in decision-making on the coverage of new antivirals for hepatitis C

Katharina Kieslich (Department of Primary Care and Public Health Sciences, King's College London, London, UK)
Jeonghoon Ahn (Department of Health Management, Ewha Womans University, Seoul, South Korea)
Gabriele Badano (Centre for Research in the Arts, Social Sciences and Humanities and Girton College, University of Cambridge, Cambridge, UK)
Kalipso Chalkidou (NICE International, London, UK)
Leonardo Cubillos (Dartmouth Hitchcock Medical Center, Dartmouth Medical School, Lebanon, New Hampshire, USA)
Renata Curi Hauegen (Center for Technological Development in Health, Oswaldo Cruz Foundation, Rio de Janeiro, Brazil)
Chris Henshall (Health Economics Research Group, Brunel University London, London, UK)
Carleigh B Krubiner (Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA)
Peter Littlejohns (Department of Primary Care and Public Health Sciences, King's College London, London, UK)
Lanting Lu (School of Public Administration and Policy, Renmin University of China, Beijing, China)
Steven D Pearson (The Institute for Clinical and Economic Review, Boston, Massachusetts, USA)
Annette Rid (Department of Social Science, Health & Medicine, King's College London, London, UK)
Jennifer A Whitty (Norwich Medical School, University of East Anglia, Norwich, UK and School of Pharmacy, University of Queensland, Brisbane, Australia)
James Wilson (Department of Philosophy, University College London, London, UK)

Journal of Health Organization and Management

ISSN: 1477-7266

Article publication date: 15 August 2016




New hepatitis C medicines such as sofosbuvir underline the need to balance considerations of innovation, clinical evidence, budget impact and equity in health priority-setting. The purpose of this paper is to examine the role of public participation in addressing these considerations.


The paper employs a comparative case study approach. It explores the experience of four countries – Brazil, England, South Korea and the USA – in making coverage decisions about the antiviral sofosbuvir and involving the public and patients in these decision-making processes.


Issues emerging from public participation ac tivities include the role of the universal right to health in Brazil, the balance between innovation and budget impact in England, the effect of unethical medical practices on public perception in South Korea and the legitimacy of priority-setting processes in the USA. Providing policymakers are receptive to these issues, public participation activities may be re-conceptualized as processes that illuminate policy problems relevant to a particular context, thereby promoting an agenda-setting role for the public.


The paper offers an empirical analysis of public involvement in the case of sofosbuvir, where the relevant considerations that bear on priority-setting decisions have been particularly stark. The perspectives that emerge suggest that public participation contributes to raising attention to issues that need to be addressed by policymakers. Public participation activities can thus contribute to setting policy agendas, even if that is not their explicit purpose. However, the actualization of this contribution is contingent on the receptiveness of policymakers.



This work was generously supported by the Brocher Foundation in Geneva, Switzerland, where the workshop on “Improving equitable access to health care through increasing patient and public involvement in prioritisation decisions” was held in November 2015. The authors thank the Brocher Foundation for hosting and funding this workshop. Katharina Kieslich and Peter Littlejohns are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London at King ' s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Gabriele Badano is supported by funding from the Independent Social Research Foundation. Renata Curi Hauegen is supported by the National Institute for Science and Technology on Neglected Diseases (INCT/IDN). The authors are grateful to the reviewers for their comments and suggestions on the manuscript.


Kieslich, K., Ahn, J., Badano, G., Chalkidou, K., Cubillos, L., Hauegen, R.C., Henshall, C., Krubiner, C.B., Littlejohns, P., Lu, L., Pearson, S.D., Rid, A., Whitty, J.A. and Wilson, J. (2016), "Public participation in decision-making on the coverage of new antivirals for hepatitis C", Journal of Health Organization and Management, Vol. 30 No. 5, pp. 769-785.



Emerald Group Publishing Limited

Copyright © 2016, Emerald Group Publishing Limited

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