Background: Involving community members in identifying and reporting health events for public health surveillance purposes, an approach commonly described as community-based surveillance (CBS), is increasingly gaining interest. We conducted a scoping review to list terms and definitions used to characterize CBS, to identify and summarize available guidance and recommendations, and to map information on past and existing in-country CBS systems.
Methods: We searched eight bibliographic databases and screened the worldwide web for any document mentioning an approach in which community members both collected and reported information on health events from their community for public health surveillance. Two independent reviewers performed double blind screening and data collection, any discrepancy was solved through discussion and consensus.
Findings: From the 134 included documents, several terms and definitions for CBS were retrieved. Guidance and recommendations for CBS were scattered through seven major guides and sixteen additional documents. Seventy-nine unique CBS systems implemented since 1958 in 42 countries were identified, mostly implemented in low and lower-middle income countries (79%). The systems appeared as fragmented (81% covering a limited geographical area and 70% solely implemented in a rural setting), vertical (67% with a single scope of interest), and of limited duration (median of 6 years for ongoing systems and 2 years for ended systems). Collection of information was mostly performed by recruited community members (80%).
Interpretation: While CBS has already been implemented in many countries, standardization is still required on the term and processes to be used. Further research is needed to ensure CBS integrates effectively into the overall public health surveillance system.