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Tribal Epidemiology Toolkit - Data Collection

Toolkit Sections
Background and Introduction
Data Collection
Data Linkage
Data Sharing
Collaboration Examples
Communication Resources/Tools

Many excellent resources exist on AIAN data collection and use, among them the U.S. Department of Health and Human Services (HHS) reports, Gaps and Strategies for Improving AI/AN/NA Data and Data Catalog on AI/AN/NA Health and Well-being, and the newly released Tribal Epidemiology Center report, Best Practices in AIAN Public Health.. Rather than reproduce existing work, below, we highlight a few salient considerations for those working with AIAN data.
Birth and Death Records
Every ten to 15 years, the National Center for Health Statistics (NCHS), in collaboration with state registrars, revises the U.S. Standard Certificates of Live Birth and Death and the Fetal Death Report. The last two rounds of revisions occurred in 1989 and in 2003. Although generally all states adopt these standard data collection templates, state registrars are ultimately responsible for the certificates used within their jurisdictions. And while some states began implementing the 2003 revisions immediately, other states are still in the process of updating their information systems to accommodate the revised data fields.
For the purpose of this toolkit, the most notable change made in 2003—already implemented on all U.S. state birth certificates, but not all death certificates—pertains to racial identification. The new format is a series of checkboxes, and individuals are now permitted to choose multiple races. If AIAN is selected, individuals are asked to provide the name of their “enrolled or principle tribe”—an important designation since the U.S. government limits official enrollment to one federally recognized tribe, even though an individual may have ancestry in multiple tribes. Nonetheless, the revision increases the information collected and thus available for public health purposes. This change in the race identification and inclusion of tribal affiliation increases the data available which can be utilized by tribes, if shared, to enhance surveillance and implement health interventions.
Data Collection Elements
In addition to customary data collection elements—such as sex, age and years of formal education—it can be helpful to collect additional information on AIAN peoples.
  • Place of residence, whether on, near, or off reservation is useful to identify where disease is occurring and where to target an intervention.
  • Utilization of an IHS facility for healthcare—a possible data option when collecting healthcare/insurance information—serves to identify the IHS as a potential partner in planning enhanced surveillance or prevention programs for IHS clients.
  • Enrollment in a state-or federally-recognized tribe, either in-state or out-of-state, alerts authorities to potential tribal partners. However, tribal affiliation is often difficult to obtain and, in small populations, is frequently identifiable and cannot be publicly reported.
  • Multi-racial status, including partial Hispanic ethnicity, can inform development of culturally-appropriate interventions and materials.
Data Use Policies
When collecting tribal affiliation in state and municipal health department surveys, it is critical to have policies in place regarding data use and access. Such policies will ensure the confidentiality of respondent data and compliance with state and federal laws regarding personal health information. They may also boost response rates by making respondents feel more confident that their personal information will be safeguarded. Sample data-sharing and data-handling policies are presented under Section IV below.
Data Quality
Low quality data can be worse than no data at all, if it misrepresents the health status of a population and leads to misdirected programming and wasted resources. Two strategies to improve data quality are standardization and oversampling.
OMH Data Standards: Standardizing the collection and reporting of data is a fundamental strategy to ensure uniform data quality and consistent formatting and to enable valid comparisons across datasets and over time. The HHS Office of Minority Health (OMH), maintains templates for collection of several key data elements, including race and ethnicity, sex, primary language, and disability status. These OMH standards are based on standards issued by the U.S. Office of Management and Budget (OMB) in 1997 (the so-called “1997 standards”) that are the basis for most HHS collection initiatives, including the National Health Interview Survey (NHIS) and the Current Population Survey. The OMH standards offer the advantage of additional granularity in the race and ethnicity categories to better document health disparities. This additional granularity provides useful information for multi-racial individuals, especially those with Asian, Native Hawaiian or Pacific Island ancestry; unfortunately the standards do not include enrolled or principle AIAN tribal affiliation.
Oversampling for Statistical Significance: Oversampling a minority population in population-wide surveys provides a higher degree of statistical significance when data are analyzed. In particular, oversampling yields more robust data that can be more accurately generalized across respondent populations. For these reasons, the National Health and Nutrition Examination Survey began oversampling Mexican Americans in 1988 and Blacks/African Americans in 2007, and the NHIS began oversampling Hispanic and Black/African American populations in 1995 and Asians in 2006. Oversampling AIANs in state and national population-based surveys would likewise enhance data quality for this population.
Determining AIAN Denominators for Rates
It is necessary to know the total AIAN population of a selected jurisdiction (nation, state or tribe) in order to calculate many health statistics, notably including disease rates. This information can be obtained from a few key sources.
U.S. Census Data: Most often, the decennial census is used as the primary source of AIAN population data, as it attempts to provide a true count of the population rather than an estimate. U.S. Census data are often used to estimate race/ethnicity-specific rates for AIAN populations at state, county and metropolitan levels. However, prior to 2000, the U.S. Census allowed the reporting of only one of four races: AIAN, Asian or Pacific Islander, Black, or White. Beginning in 2000, respondents were permitted to self-report one or more races, in accord with the OMB 1997 standards. The NCHS developed a “bridging” method to assign individuals who self-selected multiple races on the 2000 Census to the four single-race groups used before 2000. Bridged race population estimates are available from the NCHS website, for those wishing to make comparisons over time. The U.S. Census states not to compare race and ethnicity data from the American Community Survey (ACS), only to utilize the decennial census.
Tribal Rolls: If working with individual tribes, tribal rolls can be used for population data. However, if calculating rates for tribal members living on a particular reservation, be sure to exclude those living off reservation (as the rolls include both). Additionally, some tribes enroll members only when they turn 18; therefore, if determining tribe-specific rates, work with the tribe to familiarize yourself with the enrollment criteria.

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