JMIR Publications

ABSTRACT

Background:

From 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.

Objective:

The FR is a public health registry comprising individuals and families exposed to the FWC. While several FR outcomes analyses have been published, a complete description of the FR’s development and implementation have not yet been reported. This paper describes the history, design, and implementation of the FR, presenting details important to support FR data users and others considering public health registries and their data.

Methods:

Designed as a public health intervention with robust community engagement in every aspect, the FR enrolled participants to identify concerns, support connection to existing community services, and conduct surveillance related to health and environmental impact of lead exposure. Eligibility requirements included 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 was list-based, community-outreach-based, and marketing-based. Participants enrolled primarily online or by phone and completed a survey to evaluate health impacts of the FWC and screen for service needs. Data collected at enrollment included demographics, physical/mental health, child development, prior utilization of services, and environmental/lead-exposure risks. Based on responses, enrollees were 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.

Results:

FR enrollment was open from December 2018 to May 2025. A total of 22,283 participants enrolled. Publication of findings has begun. Additional data collection is ongoing.

Conclusions:

The 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 ongoing referrals, surveillance, and mitigation efforts.