Study Protocol for Developing a Public Health Registry: The Flint Registry Experience

BackgroundFrom April 25, 2014, to October 15, 2015, residents of Flint, Michigan, were unknowingly exposed to contaminated water after a drinking water source switch. This public health disaster, the Flint water crisis (FWC), resulted in population-wide lead-in-water exposure for 18 months. A potent neurotoxin, lead is associated with multiple long-term adverse health conditions. In response to the FWC, the Flint Registry (FR) was formed to mitigate the impact of the crisis by proactively identifying the health and development concerns of participants and providing secondary prevention resources to address their needs. MethodsDesigned as a public health intervention with robust community engagement in every aspect, the FR enrollment is non-end-dated with ongoing evaluation and screening. Eligibility requirements include individuals who lived, worked, or went to school at an address serviced by the City of Flint water system anytime from 4/25/2014 to 10/15/2015, including those exposed prenatally. Recruitment is list-based, community-outreach-based, and marketing-based. Participants enroll primarily online or by phone and complete a survey to evaluate health impacts of the FWC and screen for service needs. Data collected at enrollment includes demographics, physical/mental health, child development, prior utilization of services, and environmental/lead-exposure risks. Based on responses, enrollees are referred within a community referral network to services in the categories of lead elimination, health, nutrition, and child development via an automated process. Frequencies of reported diagnoses, health symptoms, food access/insecurity problems, and educational support needs are compared to city, county, state, and national measures to identify ongoing disparities. Referrals identify the unmet needs for secondary prevention services. DiscussionThe FR protocol is unique because it not only conducts longitudinal surveillance, but it also improves public health through a community-wide referral process, allowing many people to be connected to health-promoting resources. This protocol is applicable to other public health crises due to its broad, city-wide surveillance and mitigation efforts, reduction of barriers to maximize participation, and incorporation of community voice. The FR protocol was designed in concert with the community, and community engagement remains a priority. Future work includes a diversified community engagement approach, ongoing enrollment, referrals, surveillance, and mitigation efforts.