Data Collection

“Nothing about us without us.”

Data Sovereignty 

To honor data sovereignty, tribes need to be involved in the decisions to collect, use, and disseminate any data on tribal members before data are collected.

Data on tribal members are already collected by non-tribal public health entities (such as state and local health departments). For the purposes of this toolkit, these data are referred to as “Tribal data”. Tribes have a special interest in this data and have particular rights to control the collection and use of this data. This is not, however, the only data Tribes are able to receive for public health purposes. Tribes and TECs are able to receive any data they deem necessary to perform their public health functions – not only “Tribal data”. In other words, Tribes and TECs can receive data for non-Tribal members and for people living off the reservation if they believe it is necessary to perform their public health functions. 

 

Challenges to Collection and Use

One of the biggest challenges when discussing the collection and use of Tribal data are what constitutes “Tribal data”. In the broadest sense, Tribal data are data or information on members of a specific Tribe or that describes a specific Tribe. 

As noted earlier, AI/AN race as collected by health departments is not always the same as Tribal members. People who identify as AI/AN can be Tribal members, but they may not be. They could also live on Tribal lands of one Tribe but be members of a different Tribe. It can be difficult – or impossible – for non-Tribal public health entities to accurately identify Tribal members. 

Even when reported, race and ethnicity can be inadequate to accurately identify AI/AN Tribal members. AI/ANs are more likely to identify as mixed race and single-race AI/AN are more likely to identify as Hispanic than other racial groups. Over 60% of AI/ANs identified as more than one race in the 2020 Census and 31% were identified as Hispanic or Latino ethnicity.  

 

Data Quality Improvements

Many are working to improve the identification of Tribal members and improve the quality of data. Some ways that have been used to identify Tribal members include: 

 

    Any attempts to more accurately identify Tribal members should be done in partnership with the Tribes involved. A non-Tribal public health entity may have to have different processes for members of different Tribes, based on each Tribes’ preferences. Tribes need to be actively involved in the decision making about their members’ data collection and use. 

     

    Data Access And Sharing

    “Tribes and TECs are excluded from the full participation in the public health data system resulting in continuing health disparities experienced by AI/AN communities.”

    Data Access

    Data access refers to the availability and retrievability of data from a database or data source. It includes both physical access and the laws and policies which govern access. The current system for transmitting public health data are outlined in the image above. The image depicts the flow of data between health care and public health entities. More simply it shows that data flows from health providers to what they call Local/Regional/State Public Health Authorities, and then to the CDC and beyond depending on the scope of the data.

    Tribes and TECs should be listed within the Local/Regional/State Public Health Authority but are not. There are different ways to incorporate Tribal public health departments into a state or local jurisdiction’s data flow. The technical underpinnings of the access are less important than the commitment to regular and timely access to needed public health data by Tribes. 

    Laws Governing Data Access

    Protected Health Information (PHI) is information that can be used to identify an individual. 

      • May include demographic information, medical records, test results, etc. 
      • Also includes information that, while not identifiable on its own, may be combined with other information to identify a person, such as name, Social Security Number, home address, and birth date. 

    The Health Insurance Portability and Accountability Act (HIPAA) is the federal law that requires covered entities to protect PHI—the so-called “Privacy Rule.” The following individuals or organizations are subject to the Privacy Rule: 

      • Covered entities include healthcare providers, health plans, or healthcare clearinghouses that transmit health data electronically. 
      • A business associate is an organization that does work that requires access to PHI on behalf of a HIPAA-covered entity. 

    The HIPPA Privacy Rule allows for sharing PHI without individual consent for several purposes, including public health activities. Tribes and TECs, like state and local health departments, can receive PHI because of this Privacy Rule. Specifically, PHI can be disclosed without an individual’s authorization or permission for public interest and benefit activities related to the following 12 national priority benefit purposes:

        • When required by law 
        • Public health activities 
        • Victims of abuse or neglect or domestic violence 
        • Health oversight activities 
        • Judicial and administrative proceedings 
        • Law enforcement 
        • Functions (such as identification) concerning deceased persons 
        • Cadaveric organ, eye, or tissue donation 
        • Research, under certain conditions 
        • To prevent or lessen a serious threat to health or safety 
        • Essential government functions 
        • Workers’ compensation 

       

      Public Data Release

      There is a long history of data being used to characterize Tribes in a negative way and promote prejudice. These examples, among many, highlight the distrust between Native communities, researchers, and public health.

      Tribes and TECs can lawfully receive data that contains PHI because they are PHAs. Concerns about privacy that apply to public data release (such as small numbers) should never be a consideration when releasing data to a Tribe requesting information for public health purposes. This type of release is not public and is allowed at the most specific (individual) level. 

      Tribes and TECs are sometimes denied access to Tribal members’ data because of concerns about “small numbers”. Aggregate case numbers are at times suppressed when given to Tribes because there are few cases of a given disease. Disclosure of aggregate public health data to Tribes or TECs, however, should never be subject to cell suppression due to small numbers. Tribes and TECs can legally receive PHI, making suppression because of small numbers unnecessary. 

      Data which can be used to characterize a single Tribe should be considered data that is Tribally owned, no matter the source of the data. 

      “Tribes should be consulted and give consent before publication

      of any information which characterizes them by name.”  

       

      State-Tribe Partnership Examples

      Arizona 

      New Mexico 

      • The New Mexico Department of health developed secure Tribal queries based on Tribal Sovereignty and Tribal Public Health Authority. 
      • New Mexico state policy considers cases – or any public health record – within a Tribal boundary to be under the jurisdiction of that Tribe. Tribes are able to receive this data from the state. 
      • The state also allows for identification of and analysis by Tribal affiliation for Tribal members who reside outside of Tribal lands. 

      Oregon  

      Washington

           

          Continue The Toolkit 

          Data Is Essential

          Tribal Background

          Cultural Humility

          Sovereignty & Health 

          Data Collection & Access

          Tools & Resources