Community pandemic response: the importance of action led by communities and the public sector

The world faces multiple intersecting pandemics: COVID-19 and mpox (formerly known as monkeypox) have joined HIV/AIDS and a current outbreak of Ebola virus disease to create a dangerous global disease environment. Climate change is making outbreaks more likely.¹ An important question for global health policy is which elements should be considered essential to effective pandemic prevention, preparedness, and response (PPR). As the world considers a new international PPR convention or agreement and financing mechanisms, we propose that strong community infrastructure is a necessary element that has been insufficiently addressed in PPR frameworks.

Trust and equity are two factors that determine successful pandemic response.² Mistrust undermines disease detection and health interventions. HIV and Ebola virus disease, for example, have spread partly because people avoided diagnosis for fear of stigma and discrimination.³ Mistrust and misinformation undercut COVID-19 vaccination⁴ and propel unsafe burial of loved ones who die of Ebola virus disease.⁵ Meanwhile, inequity also fuels pandemics. Viruses thrive when responses are unequal and some people are left behind—whether migrants in the COVID-19 response, people affected by poverty in informal settlements during cholera outbreaks, or populations of men who have sex with men, sex workers, and people who inject drugs who are at increased risk of HIV.6, 7

Community-led responses—particularly the work of organisations led by, and accountable to, people from affected communities—often bring trust, establish lines of communication, and reach marginalised groups when the state cannot.8, 9 Civil society can be a partner to prevent disease outbreaks becoming pandemics, as the Sustainable Development Goal 3 Global Action Plan and Accelerators recognised.¹⁰ Importantly, there are complementary but different roles for community-led organisations and government, which is responsible for its population's right to health. A government role in, for example, community engagement and employing community health workers is necessary but not sufficient.

Community response therefore requires action led by both the public sector and community actors. However, as the Independent Panel for Pandemic Preparedness and Response highlighted, the role of community health workers and responses as well as “the potential for communities to shape the response at the decision-making table has been severely neglected”.¹¹ Many PPR documents and plans, if they deal with community infrastructure, overlook community-led efforts. There is an opportunity to move to more comprehensive community engagement in such efforts, such as in preparedness assessments (eg, joint external evaluation¹²). We suggest community PPR infrastructure should include three elements: services and accountability led by communities, state-sponsored activities in communities, and the engagement of communities. Each component is crucial to develop community preparedness and infrastructure.

At the UNAIDS Board meeting in December, 2022, outcomes were released from a consultative process over 2 years involving a multistakeholder task team of 11 governments, representing each region of the world, and 11 civil society representatives. The recommendations of the task team centre on implementing community-led responses that are “informed and implemented by and for communities themselves”.¹⁴ Focused on trust and equity capacity, a new definition in these recommendations could help funders and planners: “Community-led organizations, groups and networks, whether formally or informally organized, are entities for which the majority of governance, leadership, staff, spokespeople, membership and volunteers, reflect and represent the experiences, perspectives, and voices of their constituencies and who have transparent mechanisms of accountability to their constituencies. Community-led organizations, groups, and networks are self-determining and autonomous, and not influenced by government, commercial, or donor agendas. Not all community-based organizations are community led.”

© 2022 Willie J Allen Jr./Orlando Sentinel/Tribune News Service via Getty Images

The recommendations of the multistakeholder task team¹⁴ include developing better systems for financing community-led organisations, which often face legal, capacity, and eligibility barriers to government and donor funds; monitoring community-led capacity; and integrating data generated by community groups into response management. Community-led organisations meeting this definition will differ depending on disease and location, but might include local non-governmental organisations, women's groups, faith groups, and organisations that represent key populations, among others.

Where community-led organisations have capacity and authorisation, we have learned in our work that they can provide cost-effective pandemic health services and improve accountability. For instance, in the response to mpox, HIV/AIDS community organisations in Germany and transgender women's groups in Peru both mobilised to raise awareness and inform the LGBTQI+ community, helping reduce spread even before vaccines were available. In Thailand, key-population-led health services have reached people at increased risk of HIV, achieving among the most equitable HIV responses in the region. In South Africa, community leaders with Ritshidze, which represents people living with HIV, visit clinics and communities to assess COVID-19, HIV, and tuberculosis services and hold administrators accountable for addressing issues such as long waiting times or confidentiality gaps that keep some people away from health services. In crises, such strategies are crucial because they sustain trust and access to services. Amid war, Ukraine's 100% Life, a network of people living with HIV, has used peer networks to communicate with displaced people, delivering medicines, food, and emergency assistance, including in front-line zones.

International PPR agreements and funding should include specific goals for community-led capacity. Learning from countries and regions where community-led responses drove success on HIV/AIDS, COVID-19, Ebola, and beyond, governments and stakeholders can assess the density, capability, and funding of community organisations; presence of community-led accountability efforts; and the legal environment for organisations to provide services.

The other side of community PPR infrastructure is the key pandemic activities in and with communities by the state and, depending on context, the private sector. These activities have been previously described and defined in international contexts.¹² Community health workers are a crucial element of these efforts, reaching beyond health facilities with a role in prevention, detection, and response to pandemics.¹⁵ Two-way engagement with communities is another important area. The principle of “nothing about us without us” means moving beyond one-way risk communications to bring communities into decision making at all levels.¹² There remain gaps in our understanding about how to do this effectively, so expanded social science research and political leadership in this area are needed;¹⁶ community-led organisations have a central role in these efforts.

Ending AIDS, stopping COVID-19, mpox, and Ebola virus disease, and preparing for the next pandemic require expanded PPR infrastructure. Community-led and government-led efforts are synergistic, and both are indispensable parts of preparedness. When the next virus hits, community infrastructure can save many more lives if that is what governments and the global community set goals for, what we measure, and what we finance.