The CDC Data Project
This fall, the Centers for Disease Control and Prevention asked every U.S. state and territory to sign a contract, agreeing to share wide-ranging vaccine data and records with the federal government. Several states balked but every one signed.
But it turns out that most states ended up withholding the names, addresses, ZIP codes and dates of birth of those vaccinated and at least seven states go a step further and redact race and ethnicity data from the federal government or don’t collect it in the first place.
As part of a collaboration with the Documenting COVID-19 project at Columbia University’s Brown Institute for Media Innovation and The COVID Tracking Project at The Atlantic, we sent written and open-records requests to all 50 states, the District of Columbia and five territories for the data-sharing contracts they’ve signed with the federal government.
So far, we’ve obtained such data-use agreements from 35 states, the District of Columbia, the U.S. Virgin Islands and Guam; most withhold select pieces of information from the Centers for Disease Control and Prevention including the names of those vaccinated; their addresses; and their dates of birth. Most states have agreed to use a software program promised by the federal government for encrypting and redacting personal info and health data, called Privacy-Preserving Record Linkage, or PPRL. But it’s unclear when, or if, that software will be made available.
Privacy experts agree that pieces of so-called personally-identifiable information, or PII — like names and ZIP codes — are routinely “de-identified” or scrubbed from government data portals before being shared. And by withholding them from the CDC, it has little-to-no impact on the government’s vaccine data collection efforts or its resulting plans to send out the vaccine to states.
But a handful of states — namely California, North Dakota, Texas and Vermont — go a step further and redact ethnicity and race information from the vaccine data they share with the federal government, citing state laws designed to protect patient privacy. Several states have been secretive about what data they are withholding, like New York, and others, like Montana and Texas, have opt-in requirements for patient health information to be disclosed, creating a significant data gap in the process. Idaho doesn’t collect race and ethnicity in the first place and, as a result, doesn’t have much data to provide to the CDC.
If you would like to collaborate on this project, email us at info@documentingcovid19.io.
Record Set(s)
New Mexico CDC Data Use Agreement
Date Updated: March 17, 2021
Date Added: March 17, 2021
NM
Principal Subject: State of New Mexico, New Mexico Department of Health
A copy of New Mexico's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 4, 2020
New York State CDC Data Use Agreement
Date Updated: March 17, 2021
Date Added: March 17, 2021
NY
Principal Subject: New York State, New York State Department of Health
A copy of New York State's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 5, 2020
New Hampshire CDC Data Use Agreement
Date Updated: March 17, 2021
Date Added: March 17, 2021
NH
Principal Subject: State of New Hampshire, New Hampshire Department of Health and Human Services, New Hampshire Immunization Information System
A copy of New Hampshire's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 4, 2020
Missouri CDC Data Use Agreement
Date Updated: March 16, 2021
Date Added: March 16, 2021
MO
Principal Subject: State of Missouri, Missouri Department of Health and Senior Services
A copy of Missouri's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: October 23, 2020
Arizona CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
AZ
Principal Subject: State of Arizona, Department of Health Services
A copy of Arizona's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 17, 2020
Format Details: .pdf (22 pages)
Alaska CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
AK
Principal Subject: State of Alaska, Department of Health and Social Services
A copy of Alaska's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 10, 2020
Format Details: .pdf (22 pages)
District of Columbia CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
DC
Principal Subject: District of Columbia, Department of Health
A copy of the District of Columbia's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 17, 2020
Format Details: .pdf (24 pages)
Connecticut CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
CT
Principal Subject: State of Connecticut, Department of Public Health Immunization Information System
A copy of Connecticut's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 1, 2020
Format Details: .pdf (22 pages)
Colorado CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
CO
Principal Subject: State of Colorado, Department of Public Health and Environment
A copy of Colorado's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 16, 2020
Format Details: .pdf (21 pages)
California CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 10, 2021
CA
Principal Subject: State of California, Department of Public Health
A copy of California's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 5, 2020
Format Details: .pdf (26 pages)
Wyoming CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
WY
Principal Subject: State of Wyoming, Department of Health
A copy of Wyoming's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 6, 2020
Format Details: .pdf (14 pages)
Wisconsin CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
WI
Principal Subject: State of Wisconsin, Department of Health Services
A copy of Wisconsin's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 16, 2020
Format Details: .pdf (22 pages)
West Virginia CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
WV
Principal Subject: State of West Virginia, Department of Health and Human Resources
A copy of West Virginia's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Format Details: .pdf (14 pages)
Washington CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
WA
Principal Subject: State of Washington, Department of Health
A copy of Washington's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 4, 2020
Format Details: .pdf (25 pages)
Vermont CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
VT
Principal Subject: State of Vermont, Department of Health
A copy of Vermont's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 16, 2020
Format Details: .pdf (22 pages)
Utah CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
UT
Principal Subject: State of Utah, Department of Health
A copy of Utah's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 18, 2020
Format Details: .pdf (82 pages)
Texas CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
TX
Principal Subject: State of Texas, Department of State Health Services
A copy of Texas' Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 30, 2020
Format Details: .pdf (24 pages)
Tennessee CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
TN
Principal Subject: State of Tennessee, Department of Health
A copy of Tennessee's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 2, 2020
Format Details: .pdf (15 pages)
South Dakota CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
SD
Principal Subject: State of South Dakota, Department of Health
A copy of South Dakota's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Format Details: .pdf (10 pages)
North Carolina CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
NC
Principal Subject: State of North Carolina, Department of Health and Human Services
A copy of North Carolina's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 7, 2020
Format Details: .pdf (25 pages)
Rhode Island CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
RI
Principal Subject: State of Rhode Island, Department of Health
A copy of Rhode Island's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: October 27, 2020
Format Details: .pdf (14 pages)
Pennsylvania CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
PA
Principal Subject: State of Pennsylvania, Department of Health
A copy of Pennsylvania's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 16, 2020
Format Details: .pdf (22 pages)
Oregon CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
OR
Principal Subject: State of Oregon, Oregon Health Authority
A copy of Oregon's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 4, 2020
Format Details: .pdf (22 pages)
New Jersey CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
NJ
Principal Subject: State of New Jersey, Department of Health
A copy of New Jersey's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 7, 2020
Format Details: .pdf (25 pages)
Nebraska CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
NE
Principal Subject: State of Nebraska, Department of Health and Human Servies
A copy of Nebraska's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: October 29, 2020
Format Details: .pdf (14 pages)
Mississippi CDC Data Use Agreement
Date Updated: February 11, 2021
Date Added: February 11, 2021
MS
Principal Subject: State of Mississippi, Department of Health
A copy of Mississippi's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 18, 2020
Format Details: .pdf (14 pages)
Michigan CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
MI
Principal Subject: State of Michigan, Department of Health and Human Services
A copy of Michigan's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 2, 2020
Format Details: .pdf (22 pages)
Massachusetts CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
MA
Principal Subject: State of Massachusetts, Department of Public Health
A copy of Massachusetts' Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 4, 2020
Format Details: .pdf (25 pages)
Idaho CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
ID
Principal Subject: State of Idaho, Department of Health and Welfare
A copy of Idaho's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 11, 2020
Format Details: .pdf (24 pages)
Kentucky CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
KY
Principal Subject: State of Kentucky, Department for Public Health
A copy of Kentucky's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: November 2, 2020
Format Details: .pdf (441 pages)
Indiana CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
IN
Principal Subject: State of Indiana, Department of Health
A copy of Indiana's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Format Details: .pdf (22 pages)
Illinois CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
IL
Principal Subject: State of Illinois, Department of Public Health
A copy of Illinois' Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 2, 2020
Format Details: .pdf (22 pages)
Guam CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
GU
Principal Subject: Guam, Department of Health and Human Services
A copy of Guam's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Format Details: .pdf (14 pages)
Georgia CDC Data Use Agreement
Date Updated: February 10, 2021
Date Added: February 10, 2021
GA
Principal Subject: State of Georgia, Department of Public Health
A copy of Georgia's Data Use Agreement for Covid-19 vaccine information with the Centers for Disease Control and Prevention.
Date Range: December 2, 2020
Format Details: .pdf (25 pages)
Related News Articles
Why Some States Won’t Share Race and Ethnicity Data on Vaccinations with the CDC—and Why That’s a Problem
February 16, 2021
The COVID Tracking Project at The Atlantic
By Caitlin Antonios, Mohar Chatterjee, Georgia Gee, Derek Kravitz and Kyra Senese
