Briefing 6: Public Health Surveillance & Data Collection

Manel Kappagoda, senior staff attorney at the Public Health Law Center, and Cody Venzke, senior policy counsel at the ACLU, provided an overview of Executive Order 14243, “Stopping Waste, Fraud, and Abuse by Eliminating Information Silos,” directing the consolidation of data across federal agencies. They discussed related legal challenges to data consolidation by federal agencies and shared strategies and considerations for public health practitioners.

Chat Resources

• Cody Venzke | American Civil Liberties Union: https://www.aclu.org/bio/cody-venzke
  • Cody’s email: cvenzke@aclu.org
• For more information on Act for Public Health: https://actforpublichealth.org
• Link to Silo EO: https://www.federalregister.gov/documents/2025/03/25/2025-05214/stopping-waste-fraud-and-abuse-by-eliminating-information-silos
• https://actforpublichealth.org/executive-orders-faqs/
• ACLU policy brief on the Silo Exec Order: https://assets.aclu.org/live/uploads/2025/04/2025-04-28-Data-Linkage-Policy-Paper-v5.pdf
• Social Security Administration, et al. v. American Federation of State, County, And Municipal Employees: https://www.supremecourt.gov/opinions/24pdf/24a1063_6j37.pdf
• ICE Accessing Medicaid Data Raises Privacy, Health Concerns – Newsweek: https://www.newsweek.com/ice-accessing-medicaid-data-raises-privacy-health-concerns-2100763
• Susan Morse, HHS rolls back reports of a national autism registry Healthcare Finance News (April 28, 2025) https://www.healthcarefinancenews.com/news/hhs-rolls-back-reports-national-autism-registry
• Lawsuit by CA re Medicaid data: State of California et al v. U.S. Department of Health and Human Services et al: https://oag.ca.gov/system/files/attachments/press-docs/CA%20v.%20HHS%2C%20Complaint%207.1.25.pdf
• A Privacy Act Primer: https://aisp.upenn.edu/resource-article/a-privacy-act-primer/
• North Carolina Department of Health and Human Services Data Sharing Guidebook: https://www.ncdhhs.gov/ncdhhs-data-sharing-guidebook/open
• Washington State Public Health Data Sharing Law & Policy Review, Final Report: https://waportal.org/sites/default/files/2024-07/WA%20DOH%20PH%20Data%20Legal%20Rpt%20FINAL.pdf
• Does the Federal Government Have a Right to States’ Data? https://www.govtech.com/policy/does-the-federal-government-have-a-right-to-states-data
• ACLU policy brief on the Silo Exec Order: https://assets.aclu.org/live/uploads/2025/04/2025-04-28-Data-Linkage-Policy-Paper-v5.pdf
• Example of a state limiting data access by federal government: Colorado law: the Protect Personal Identifying Information Kept by State Act: https://leg.colorado.gov/bills/sb21-131
• Connecticut’s State Data Plan: https://www.cga.ct.gov/gae/tfs/20180726_Connecticut%20Data%20Analysis%20Technology%20Advisory%20Board/20241115/2025%20-%202026%20Connecticut%20State%20Data%20Plan%20Draft.pdf
• New Mexico rejects feds’ request for SNAP cardholder data: https://sourcenm.com/briefs/new-mexico-refuses-federal-governments-request-for-snap-cardholder-data/
• New Federal SNAP Database Notice is a Call to Action for Data Privacy Protections for Working Families, Immigrants, and Other Individuals – Network for Public Health Law: https://www.networkforphl.org/news-insights/new-federal-snap-database-notice-is-a-call-to-action-for-data-privacy-protections-for-working-families-immigrants-and-other-individuals/