title: Public participation in decision-making on the coverage of new antivirals for hepatitis C.
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.
authors.affiliation: Department of Primary Care and Public Health Sciences, King's College London, London, UK.
authors.forename: Katharina
authors.initials: K
authors.lastname: Kieslich
authors.affiliation: Department of Health Management, Ewha Womans University, Seoul, South Korea.
authors.forename: Jeonghoon
authors.initials: J
authors.lastname: Ahn
authors.affiliation: Centre for Research in the Arts, Social Sciences and Humanities and Girton College, University of Cambridge, Cambridge, UK.
authors.forename: Gabriele
authors.initials: G
authors.lastname: Badano
authors.affiliation: NICE International, London, UK.
authors.forename: Kalipso
authors.initials: K
authors.lastname: Chalkidou
authors.affiliation: Dartmouth Hitchcock Medical Center, Dartmouth Medical School, Lebanon, New Hampshire, USA.
authors.forename: Leonardo
authors.initials: L
authors.lastname: Cubillos
authors.affiliation: Center for Technological Development in Health, Oswaldo Cruz Foundation, Rio de Janeiro, Brazil.
authors.forename: Renata Curi
authors.initials: RC
authors.lastname: Hauegen
authors.affiliation: Health Economics Research Group, Brunel University London, London, UK.
authors.forename: Chris
authors.initials: C
authors.lastname: Henshall
authors.affiliation: Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA.
authors.forename: Carleigh B
authors.initials: CB
authors.lastname: Krubiner
authors.affiliation: Department of Primary Care and Public Health Sciences, King's College London, London, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Littlejohns
authors.affiliation: School of Public Administration and Policy, Renmin University of China, Beijing, China.
authors.forename: Lanting
authors.initials: L
authors.lastname: Lu
authors.affiliation: The Institute for Clinical and Economic Review, Boston, Massachusetts, USA.
authors.forename: Steven D
authors.initials: SD
authors.lastname: Pearson
authors.affiliation: Department of Social Science, Health & Medicine, King's College London, London, UK.
authors.forename: Annette
authors.initials: A
authors.lastname: Rid
authors.affiliation: Norwich Medical School, University of East Anglia, Norwich, UK and School of Pharmacy, University of Queensland, Brisbane, Australia.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Whitty
authors.affiliation: Department of Philosophy, University College London, London, UK.
authors.forename: James
authors.initials: J
authors.lastname: Wilson
mesh_terms: D000998:Antiviral Agents / Q000191:economics / Q000627:therapeutic use*; D001938:Brazil; D003256:Community Participation; D003657:Decision Making; D004739:England; D015276:Health Care Rationing; D006526:Hepatitis C / Q000188:drug therapy*; D006801:Humans; D019458:Insurance Coverage; D007348:Insurance, Health; D056910:Republic of Korea; D000069474:Sofosbuvir / Q000191:economics / Q000627:therapeutic use*; D014481:United States
chemical_list: D000998:Antiviral Agents; D000069474:Sofosbuvir
keywords: Agenda-setting; DAAs; Direct-acting antivirals; Hepatitis C; PPI; Priority-setting; Public and patient involvement; Sofosbuvir