Strengthening community-based surveillance: lessons learned from the 2018-2020 Democratic Republic of Congo (DRC) Ebola outbreak

Introduction There has been little documentation of the large networks of community health workers that contributed to Ebola Virus Disease (EVD) surveillance during the 2018-2020 Democratic Republic of Congo (DRC) epidemic in the form of community-based surveillance (CBS). These networks, comprised entirely of local community members, were a critical and mostly unrecognized factor in ending the epidemic. Challenges with collection, compilation, and analysis of CBS data have made their contribution difficult to quantify. From November 2019 to March 2020, the DRC Ministry of Health (MoH), the World Health Organization (WHO), and Medecins Sans Frontieres (MSF) worked with communities to strengthen existing EVD CBS in two key health areas in Ituri Province, DRC. We describe CBS strengthening activities, detail collaboration with communities and present results of these efforts. We also provide lessons learned to inform future outbreak responses.Methods As the foundation of CBS, community health workers (CHW) completed training to identify and report patients who met the EVD alert definitions. Alerts were investigated and if validated, the patient was sent for isolation and EVD testing. Community members provided early and ongoing input to the CBS system. We established a predefined ratio of community- elected CHW, allocated by population, to assure equal and adequate coverage across areas. Strong performing CHW or local leaders managed the CHWs, providing a robust supervision structure. We made additional efforts to integrate rural villages, revised tools to lighten the reporting burden and focused analysis on key indicators. Phased roll-out of activities ensured time for community discussion and approval. An integrated treatment center (ITC) combined EVD testing and isolation with free primary health care (PHC), referral services, and an ambulance network.Results A total of 247 CHW and supervisors completed training. CBS had a retention rate of 94.3% (n = 233) with an average daily reporting rate of 97.4% (range 75.0-100.0%). Local chiefs and community leaders participated in activities from the early stages. Community feedback, including recommendations to add additional CHW, run separate meetings in rural villages, and strengthen PHC services, improved system coverage and performance. Of 6,711 community referrals made, 98.1% (n = 6,583) were classified as alerts. Of the alerts, 97.4% (n = 6,410) were investigated and 3.0% (n = 190) were validated. Of the community referrals, 73.1% (n = 4,905) arrived for care at the ITC. The contribution of CBS to total alerts in the surveillance system increased from an average of 47.3% in the four weeks prior to system strengthening to 69.0% after. In one of the two health areas, insufficient reporting in rural villages suggested inadequate coverage, with 8.3% of the total population contributing 6.1% of alerts.Discussion CBS demonstrated the capacity of community networks to improve early disease detection and expand access to healthcare. Early and consistent community involvement proved vital to CBS, as measured by system performance, local acceptance of EVD activities, and health service provision. The CBS system had high reporting rates, number of alerts signaled, proportion of alerts investigated, and proportion of community referrals that arrived for care. The change in contribution of CBS to total alerts may have been due in part to system strengthening, but also to the expansion in the EVD suspect case definition. Provision of PHC, referral services, and an ambulance network linked EVD response activities to the existing health system and facilitated CBS performance. More importantly, these activities provided a continuum of care that addressed community prioritized health needs. The involvement of local health promotion teams was vital to the CBS and other EVD and PHC activities. Lessons learned include the importance of early and consistent community involvement in surveillance activities and the recommendation to assure local representation in leadership positions.