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Tribal Epidemiology Centers: HHS Actions Needed to Enhance Data Access

GAO-22-104698 Published: Mar 04, 2022. Publicly Released: Mar 04, 2022.
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Fast Facts

American Indians and Alaska Natives have worse health outcomes than the general U.S. population—such as a life expectancy that is 5.5 years shorter than the U.S. average. To provide public health support, Congress established tribal epidemiology centers and authorized their access to data collected by the Department of Health and Human Services.

However, we found that the 12 centers had varying access to HHS's data. For instance, some centers had access to HHS's COVID-19 vaccination data, but others did not.

We recommended HHS clarify the data it will make available to these centers.

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Highlights

What GAO Found

Among the 12 tribal epidemiology centers (TEC), which are public health entities serving American Indian and Alaska Native (AI/AN) communities across the U.S., access to epidemiological data varied. Federal law authorizes TECs' access to data from the Department of Health and Human Services (HHS), including data from HHS's Centers for Disease Control and Prevention (CDC) and Indian Health Service (IHS), for a variety of public health purposes. However, according to TEC officials, access to non-public HHS data, such as CDC data on positive COVID-19 tests or IHS data on patient diagnosis codes, varied among TECs. TEC officials also described challenges accessing some CDC and IHS data, such as the inability to access certain CDC data on infectious diseases and other conditions. TECs used available epidemiological data to monitor the spread of COVID-19 and to conduct other analyses that support public health decision-making in AI/AN communities. However, TEC officials told GAO that their access to data influences the analyses they are able to conduct, and that a lack of access can limit their ability to provide AI/AN communities with meaningful information needed for decision-making.

The presence of CDC and IHS data sharing systems and agreements between the agencies and TECs have facilitated TECs' access to a range of epidemiological data, including on COVID-19 cases and the health of IHS facility patients. However, a number of factors have also hindered TEC access to HHS data, including

  • A lack of policies affirming TECs' authority to access HHS data . Officials from seven of 12 TECs indicated that some CDC and IHS officials with whom they interacted when requesting data did not recognize that HHS is required by federal law to provide data in its possession to TECs. According to IHS and CDC officials, as of November 2021, HHS had not clarified the specific data that TECs are entitled to access under federal law.
  • A lack of guidance for TECs on how to request data, and agency procedures on how to respond to such requests . CDC and IHS had not developed guidance for TECs on how to submit data requests or established written agency procedures for reviewing and responding to these requests as of November 2021, according to agency officials. CDC and IHS officials told GAO that they did not believe that guidance or procedures related to TECs' data access was needed, because TECs' requests were infrequent and they believed they had successfully responded to their needs. However, officials from six TECs told GAO that the process to request and obtain data was unclear and inconsistent within HHS. In addition, officials from seven TECs reported facing delays receiving CDC or IHS data, with some delays lasting over 1 year. According to TEC officials, these delays or limitations in accessing data made it difficult for them to adequately support tribal and community leaders, as they work to understand and address the health needs of AI/AN in their communities, including during the COVID-19 pandemic.

Why GAO Did This Study

AI/ANs have experienced long-standing problems accessing health care services and worse health outcomes than the general U.S. population, such as a life expectancy that is 5.5 years shorter than the U.S. average, according to IHS. To provide tribes with public health support, Congress required the establishment of TECs and, in 2010, authorized their access to HHS data. The COVID-19 pandemic highlighted the need to understand TECs' access to epidemiological data to help AI/AN communities prevent and control diseases.

The CARES Act includes a provision for GAO to report on its ongoing COVID-19 monitoring and oversight efforts. Also, GAO was asked to examine TECs' access to epidemiological data. This report (1) describes TECs' access to and use of epidemiological data, and (2) examines factors that have affected TECs' access to HHS epidemiological data. GAO reviewed HHS policies and documents and documentation of TECs' data requests. GAO also interviewed officials from CDC, IHS, and all 12 TECs.

Recommendations

GAO is making five recommendations, including that HHS clarify the data it will make available to TECs as required by federal law; and that CDC and IHS develop guidance on how TECs should request data, and develop agency procedures on responding to such requests. HHS concurred with these recommendations.

Recommendations for Executive Action

Agency Affected Recommendation Status
Department of Health and Human Services The Secretary of HHS should develop a policy clarifying the HHS data (including monitoring systems, delivery systems, and other protected health information) that are to be made available to TECs as required by federal law. (Recommendation 1)
Open
HHS agreed with our recommendation. HHS officials told us that the department sought input from tribal leaders on developing an HHS tribal data sharing policy in October 2022. After this tribal consultation, HHS formed a workgroup composed of subject matter experts from IHS and CDC to draft a policy that sets out high level expectations for data sharing with tribes and TECs, but provides CDC, IHS, and other HHS agencies the flexibility to develop their own implementation procedures. In January 2024, HHS announced a tribal consultation and invited tribal leaders to provide feedback on the draft policy. As part of this announcement, HHS shared a copy of this draft HHS-wide policy, which outlines the types of data to be made available to TECs and expectations for responding to TEC requests for data in the custody and control of HHS and its operating divisions. To fully implement this recommendation, HHS must complete development of a policy clarifying the data that are to be made available to TECs.
Centers for Disease Control and Prevention 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)
Closed – Implemented
HHS agreed with our recommendation. In December 2022, CDC issued guidance for TECs on how to request data, released a CDC Public Health Datasets Access Guide for Tribes and Tribal Epidemiology Centers, and launched a Tribal Health Data website. Collectively, these resources include information on data potentially available to TECs, how to request data, agency contacts, and information on any related requirements for accessing data, such as whether a data use agreement is required, as well as how long it may take TECs to obtain access. These resources also include contextual information on TECs' authority to access CDC data as well as limitations CDC faces in accessing quality data, and note that the guidance is meant to provide a foundation for future engagement with TECS, and will be assessed and improved over time through CDC's Data Modernization Initiative.
Centers for Disease Control and Prevention 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 time frames for responding to TEC requests. (Recommendation 3)
Closed – Implemented
HHS agreed with our recommendation. In December 2022, CDC issued internal procedures governing how agency officials should respond to TEC requests for public health data, released a CDC Public Health Datasets Access Guide for Tribes and Tribal Epidemiology Centers, and launched a Tribal Health Data website. Collectively, these resources include information on data potentially available to TECs, agency contacts, and protocols for reviewing and responding to TEC data requests. The protocols specify that (1) all TEC data requests should be acknowledged and provided to a CDC point of contact within 24 business hours; (2) any clarification that CDC needs related to the request, along with information on process and forms, should be provided to TEC requestor as soon as possible; and (3) CDC officials should be following current protocols for providing data while also reviewing those protocols to identify how they can be streamlined for TECs since they are public health authorities. It also notes that CDC will be tracking and monitoring its customer service to CDC's Tribal Partners, including TECs. CDC's newly released resources include contextual information on TECs' authority to access CDC data and outline the goal of improving data sharing with Tribal Partners such as TECs. The new resources also note that the process for data sharing is meant to provide a foundation for future engagement and will be assessed and improved over time as part of CDC's Data Modernization Initiative.
Indian Health Service The Director of IHS should develop written guidance for TECs on how to request data. Such guidance should include information on the data 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 4)
Closed – Implemented
HHS agreed with our recommendation. In January 2024, IHS released "Procedures and Guidance For Tribal Epidemiology Center Access to Indian Health Service Protected Health Information for Public Health Activities" and launched its TEC Data Access Guidance website. Collectively, these resources include information on data available to TECs, how to request data, agency contacts, and information on how long it may take TECs to obtain access. These resources also include contextual information on TECs' authority to access IHS data. Also, the guidance notes that the documents are designed to provide clarity and transparency for ongoing IHS engagement with TECs on the sharing of IHS data to support their public health activities, and will be updated, as needed, to reflect any changes in policy or implementation practices.
Indian Health Service The Director of IHS should develop and document agency procedures on reviewing TEC requests for and making data available to TECs. These procedures should include a description of the data available to TECs, agency contacts, criteria for reviewing TEC data requests, and time frames for responding to TEC requests. (Recommendation 5)
Closed – Implemented
HHS agreed with our recommendation. In January 2024, IHS released "Procedures and Guidance For Tribal Epidemiology Center Access to Indian Health Service Protected Health Information for Public Health Activities" and launched its TEC Data Access Guidance website. Collectively, these resources include information on data available to TECs, agency contacts, information on IHS review of data requests, and expected timeframes for responding to TEC requests. These resources also include contextual information on TECs' authority to access IHS data. Also, the procedures note that the documents are designed to provide clarity and transparency for ongoing IHS engagement with TECs on the sharing of IHS data to support their public health activities, and will be updated, as needed, to reflect any changes in policy or implementation practices.

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Topics

CommunitiesData sharingDisease controlElectronic health recordsFederal lawHealth careHealth care informationInformation accessNative American health servicesPatient carePublic health