Characteristics of Participants Who Consented to Share Data with a Public Health Registry After an Environmental Disaster

On 25 April 2014, the municipal water source in Flint, Michigan, was switched to the Flint River. Failure to properly treat the water for corrosion resulted in lead contamination of the water system. Resident concerns were dismissed by local, state, and federal government agencies until community participatory and clinical pediatric research demonstrated the contamination, and the water was restored to the original source 18 months later. Recovery efforts established a public health registry, funded by the Centers for Disease Control and Prevention. A grant of public health authority and registry funding were awarded to Michigan State University in August 2017 to establish a health surveillance system and public health intervention to refer exposed individuals to community services. Community feedback requested tiered data-sharing consent options. Participants who consented to join the registry were presented with four consent questions: to be contacted about future research opportunities, to use survey data to make referrals to services on their behalf, to share with the registry their State of Michigan Department of Health and Human Services (MDHHS) program data, and to share Michigan Medicaid administrative data. This descriptive study found that most participants consented to being contacted for future research (88%), sharing data for referrals (84%), and sharing data from MDHHS programs (77%) with the registry. Among participants with Medicaid insurance, 74% consented to sharing Medicaid data. Consent increased with age and decreased with income and education. Consent was higher among participants reporting food insecurity in the last 12 months. Consent to share data was unexpectedly high in the context of environmental disaster, trauma, and government distrust. Further work is needed to explore whether participation in public health activities is positively impacted by the implementation of a tiered consent process to share data.