Revisiting the role of civil society in responses to infectious disease outbreaks: a proposed framework and lessons from a COVID-19 vaccine equity coalition in Uganda

In perhaps the best-known example, CSO campaigns, policy advocacy and scientific partnerships have proven crucial in accelerating the development and global accessibility of treatments for HIV, altering the course of HIV infection programmes and contributing to millions of lives being saved.2 As public health researchers and advocates focused on infectious diseases in Uganda, we have seen how ongoing action from CSOs—such as The AIDS Support Organization, which cares for 100 000 Ugandans living with HIV while leading additional testing, counselling and public awareness efforts3—has brought the country within the reach of achieving the UNAIDS 95-95-95 targets.4 Thanks to their established relationships with constituents and proximate understandings of local realities, CSOs are uniquely positioned to mobilise communities behind evidence-based public health recommendations, including in settings where more distal governmental and academic institutions may struggle to make an impact.5 6 Despite the potential benefits and history of success, governments, local authorities, donors and international development organisations often do not meaningfully involve civil society in initial responses to disease outbreaks.7 8 This missed opportunity for advancing health equity has been sharply illustrated by the COVID-19 pandemic. Early in the pandemic, Rajan et al analysed national COVID-19 task forces and found, among other deficiencies, that CSOs were ‘hardly involved in national government decision-making nor its response efforts’.9 An Office of the United Nations High Commissioner for Human Rights report 2 years later concluded ‘few, and in most cases no, participatory mechanisms were established for discussion and decision-making’ between CSOs and other COVID-19 stakeholders.10 Lack of meaningful engagement with CSOs weakens public health, decreasing the ability of authorities to anticipate and respond to delivery challenges and sidelining organisations with established community trust.8 Finding a gap in civil society involvement in the COVID-19 response in Uganda, in September 2021, we formed the Vaccine Advocacy Accelerator—Uganda (VAX-Uganda): a coalition of CSOs, health workers and academics working to increase access to and uptake of COVID-19 vaccination throughout Uganda, where, at the time, less than 1% of the population had completed a primary vaccination series.11 Inspired by the impact of Ugandan CSOs on the HIV pandemic, we aimed to equip Ugandan CSOs wit