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 activities 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.