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Title: Public participation in decision-making on the coverage of new antivirals for hepatitis C
Authors: Kieslich, Katharina
Ahn, Jeonghoon
Badano, Gabriele
Chalkidou, Kalipso
Cubillos, Leonardo
Hauegen, Renata Curi
Henshall, Chris
Krubiner, Carleigh B.
Littlejohns, Peter
Lu, Lanting
Pearson, Steven D.
Rid, Annette
Whitty, Jennifer A.
Wilson, James
Affilliation: King’s College London. Department of Primary Care and Public Health Sciences. London, UK.
Ewha Womans University. Department of Health Management. Seoul, South Korea.
University of Cambridge. Girton College. Centre for Research in the Arts, Social Sciences and Humanities. Cambridge, UK.
NICE International. London, UK.
Dartmouth Medical School. Dartmouth Hitchcock Medical Center. Lebanon, NH, New Hampshire, USA.
Fundação Oswaldo Cruz. Centro de Desenvolvimento Tecnológico em Saúde. Rio de Janeiro, Brasil.
Brunel University London. Health Economics Research Group. London, UK.
Johns Hopkins University. Berman Institute of Bioethics. Baltimore, MD, USA.
King’s College London. Department of Primary Care and Public Health Sciences. London, UK.
Renmin University of China. School of Public Administration and Policy. Beijing, China.
The Institute for Clinical and Economic Review. Boston, MA, USA.
University of East Anglia. Norwich Medical School. Norwich, UK / University of Queensland. School of Pharmacy. Brisbane, Australia.
University College London. Department of Philosophy. London, UK.
Abstract: Purpose - 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. Design/methodology/approach - 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. Findings - 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. Originality/value - 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.
Keywords: Hepatitis C
Direct-acting antivirals
Public and patient involvement
Issue Date: 2016
Publisher: EmeraldInsight
Citation: KIESLICH, K. et al. Public participation in decision-making on the coverage of new antivirals for hepatitis C. Journal of Health Organization and Management, v. 30, n. 5, p. 769-785, 2016.
DOI: 10.1108/JHOM-03-2016-0035
ISSN: 1477-7266
Copyright: restricted access
Appears in Collections:CDTS - Artigos de Periódicos

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