Guidance for Federally Recognized Tribes and Tribal Epidemiology Centers 

on Requesting CDC Public Health Data

December 30, 2022

I. Purpose

The Centers for Disease Control and Prevention (CDC) is providing this guidance to assist 

federally recognized tribes and Tribal Epidemiology Centers (TECs) in identifying and 

requesting tribal data from CDC. 

This is the first iteration of this guidance and related materials, which are meant to 

provide a foundation for further CDC engagement with tribes, TECs, national 

organizations, urban Indian organizations, and others across the public health system on

the collection, quality, analysis, and sharing of tribal data. 

In addition, through the agency’s Data Modernization Initiative (DMI), CDC is 

streamlining and improving data collection and sharing between the agency and its 

tribal and other public health partners; therefore, this guidance and approach will be 

improved over time, mainly through the DMI effort. 

This guidance is supplemented by other tribal data resources and information provided 

on CDC’s Tribal Public Health Data site. 

II. Guidance for Identifying and Accessing CDC Tribal Data

• Go to the CDC Public Health Datasets and Access Guide for Tribes and Tribal

Epidemiology Centers to view a list of datasets and systems and CDC points of

contact, and guidance on requesting and accessing the data.

• If you need assistance with identifying whether CDC has the data needed, requesting

the data, or addressing an issue or concern with a current data request, fill out the

general CDC Tribal Public Health Data Request form. CDC’s Office of Tribal Affairs

and Strategic Alliances (OTASA) will receive the form and assist you.

III. Tribal Data Sharing Background

Status of Federally Recognized Tribes and TECs as Public Health Authorities

CDC recognizes the status of federally recognized tribes as sovereign governments, 

including as public health authorities. CDC also recognizes that the Indian Health Care 

Improvement Act (IHCIA) designated Tribal Epidemiology Centers (TECs) as public health 
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authorities for the purposes of the Health Insurance Portability and Accountability Act 

(HIPAA). The IHCIA allows TECs access to data held by the Secretary of the Department 

of Health and Human Services (HHS). IHCIA states that the HHS Secretary “shall grant to 

each epidemiology center . . . access to use of the data, data sets, monitoring systems, 

delivery systems, and other protected health information in the possession of the 

Secretary.”

Need for Improved Public Health Data Collection, Sharing, and Use

In 2020, CDC launched a Data Modernization Initiative (DMI) to create modern, 

integrated, and real-time public health data and surveillance that can protect us from 

any health threat. This includes getting data where it needs to go to protect health. CDC

needs to ensure the right policies, authorities, data use agreements, and relationships 

are in place to support modern data exchange. The CDC Moving Forward effort 

reinforces the importance of providing data for timely action to protect and improve 

health.

Tribes and TECs have requested through listening sessions, tribal consultations, and 

CDC/ATSDR Tribal Advisory Committee and HHS Secretary Tribal Advisory Committee

engagements that CDC provide specific guidance on accessing tribal data generated or 

compiled from other sources by CDC. In addition, on March 4, 2022, the Government 

Accountability Office (GAO) released its report, Tribal Epidemiology Centers: HHS 

Actions Needed to Enhance Data Access. GAO provided recommendations for HHS, the 

Indian Health Service (IHS), and CDC. GAO’s recommendations for CDC are as follows: 

• “The Director of CDC should develop written guidance for TECs on how to 

request data. Such guidance should include information on data potentially 

available to TECs, how to request data, agency contacts, criteria the agency will 

use to review such requests, and time frames for receiving an agency response 

to data requests. (Recommendation 2)”

• “The Director of CDC should develop and document agency procedures on 

reviewing TEC requests for and making data available to TECs. These procedures 

should include a description of data potentially available to TECs, agency 

contacts, criteria for reviewing TEC data requests, and timeframes for 

responding to TEC requests. (Recommendation 3)”

CDC’s responses to these recommendations over time are available on the GAO report 

site. 

Status of the Data Sharing Environment

• CDC surveillance and other data systems are created and managed by individual CDC 

programs. Therefore, CDC’s population health data are not centralized. CDC recognizes 
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that there is a need to make it easier to identify, request, and access data held by CDC,

and the agency is working to address these needs. 

• One aspect of CDC’s Data Modernization Initiative is to address how to streamline and 

improve data collection and sharing between CDC and public health partners. 

• State laws determine which diseases or conditions must be reported, who must report, 

and when, how, and what information must be included. States provide data to CDC on 

a voluntary basis. CDC does not have the authority to mandate that states provide CDC

with data, nor what data they provide, nor how they provide it. 

• Most data provided to CDC is de-identified data, so CDC may or may not have data with 

the specificity that tribes or TECs request or need. All parts of the public health system 

will need to work together to improve collection, quality, analysis, and sharing of data at 

every level. 

How CDC Shares Data with Public Health Jurisdictions

• To help ensure broad access to public health information, CDC publishes statistical data

in resources like CDC WONDER, data.cdc.gov, and disease-specific atlases. These 

systems generally allow downloads of datasets with the statistics. 

• For some CDC-held datasets, public-use datasets are available online. These datasets 

provide limited data elements to reduce the risk of disclosing personal or sensitive 

information. Many of these datasets have accompanying technical assistance materials 

for accessing, analyzing, and interpreting the data and some also offer visualization 

tools. 

• Some datasets have restricted access. CDC provides information online on how to 

request access to those data. All public health authorities, including CDC researchers, 

must go through request and review processes before being provided access to 

restricted data. 

Examples of What CDC Is Doing To Improve Data Sharing with Tribes and TECs

• CDC is working to ensure its programs are aware of tribes’ and TECs’ status as public 

health authorities and reinforcing data sharing expectations. 

• CDC has released this first iteration of guidance for tribes and TECs for requesting CDC 

tribal data and has outlined internal CDC processes for receiving, tracking, and 

responding to requests. 

• On June 27, 2022, CDC representatives met with the TEC Consortium to discuss TEC 

access to CDC data. Representatives from a number of CDC programs attended. CDC 

provided a short, high-level overview of the data systems writ large and then opened 

the floor for input and recommendations from the TECs. CDC is using the information 

received to inform its data efforts. 
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• During the 24th Biannual CDC/ATSDR Tribal Advisory Committee (TAC) Meeting on

August 4, 2022, CDC received input and recommendations from the CDC/ATSDR TAC on

tribal data issues. CDC is using that input to plan and implement CDC’s data activities.

• On October 13 and 19, 2022, with HHS and IHS, CDC participated in an HHS tribal

consultation seeking input on developing an HHS Tribal Data Sharing Policy that will

cover all HHS operating divisions, including IHS and CDC. HHS expects to release a

summary of the recommendations received and the agencies’ preliminary responses to

them in early January 2023.