The United South and Eastern Tribes, Inc (USET),1 was established by the Eastern Band of Cherokee Indians, Mississippi Band of Choctaw Indians, Miccosukee Tribe of Indians of Florida, and Seminole Tribe of Florida in 1969 to serve the needs of federally recognized Tribal Nations in the southern and eastern part of the United States.
Today, USET serves 27 federally recognized member Tribal Nations located in 13 states (Alabama, Connecticut, Florida, Louisiana, Maine, Massachusetts, Mississippi, New York, North Carolina, Rhode Island, South Carolina, Texas, and Virginia) (Figure). USET established a Tribal Epidemiology Center (TEC) in 2001 that provides epidemiological services, general public health guidance, and public health program support to USET member Tribal Nations.
Racial classification inaccuracies recorded on American Indian/Alaska Native (AI/AN) death certificates2 are well documented. The eastern part of the United States has the second highest rate of racial misclassification of AI/AN decedents (35.2%).3 Much work has been done by the Centers for Disease Control and Prevention (CDC) to reclassify AI/AN decedents by matching records housed by the Indian Health Service (IHS) to the National Death Index.3 This method has been successful in improving mortality data for AI/AN populations in both state- and federal-level statistics3 but has not been able to provide meaningful Tribal Nation–specific information to USET member Nations.
Tribal Nations in the eastern and southern regions are smaller in size than many of their western counterparts. Publicly available AI/AN data are often suppressed because of small cell sizes and/or are collapsed into the “other” race category. Data that are not suppressed usually use the US Census as the denominator to calculate mortality rates. This denominator does not distinguish between citizens of federally recognized Tribal Nations, members of Tribes that are not federally recognized, and people who may have AI/AN ancestry but do not have Tribal Nation citizenship.4 This is an important distinction as the United States has a legal2 and moral trust responsibility to Tribal Nations to uphold the sovereign status of Tribal Nations to protect, regulate, and maintain ownership of the data of its citizens. Federally recognized Tribal Nations, as sovereign entities, have with an inherent right to data collected on the health and well-being of their citizens.5 Since its inception, the TEC has been tasked by Tribal leaders and health officials with providing Tribal Nation–specific data and statistics. In response to this charge, the TEC has been conducting a Tribal Nation–specific mortality surveillance project for approximately 13 years.
The TEC developed this mortality project to be continuous ongoing surveillance and has been conducting it on a recurring basis for approximately 13 years. The IHS institutional review board ruled that the project was public health practice and exempted it from full board review on December 17, 2014, and April 24, 2018. Decedent records are warehoused in a Vital Statistics module within IHS's electronic health record system, known as the Resource and Patient Management System (RPMS), and are accessible by Tribal Nation health officials.
TEC and/or Tribal Nation health staff receive decedent data from the 10 states participating in this project by one of 3 processes:
- Closed method (5 states): For states whose laws restrict access to mortality records, the TEC must provide a list of known Tribal decedents generated from RPMS (using the date of death field) to Tribal health officials for review, completion, and verification. The USET TEC sends the verified records to the state, and coded death certificate data for these decedents are returned to the TEC for entry into the Vital Statistics module in RPMS.
- Direct method (2 states): Tribal Nations in these 2 states collect death certificates directly from the state/funeral home or from the family of the deceased. Trained Tribal Nation health staff enter this information into the Tribal Nation Vital Statistics module.
- Open method (3 states): State law in these 3 states allows the mortality records for all decedents to be released to the USET TEC. The USET TEC receives the data from the state and uses the LINKS SAS program to conduct a probabilistic match to state records with RPMS demographic data on all AI/AN patients. Probabilistic matches—that is, matches that match on some, but not all, demographic data—are manually reviewed by 2 TEC staff members to determine inclusion into the Vital Statistics module. TEC staff enter matched decedent data into the appropriate Tribal Nation Vital Statistics module.
Once data are entered into the Vital Statistics modules, the USET TEC extracts, cleans, analyzes, and reports results to participating Tribal Nations on a periodic basis.
Data within the open and direct states appear more robust. Between 2002 and 2013, the crude mortality rate in Tribal Nations in open/direct states was 290 per 100 000 whereas the crude rate for Tribal Nations in closed states was 202 per 100 000. This difference is relatively small (odds ratio = 1.44) but statistically significant (P < .001; 95% CI, 1.33-1.56). These results differ from those available on CDC WONDER, where the crude mortality rate for AI/ANs for the same time frame in the 13 states in which USET Tribal Nations are located is 218 per 100 000 and ranges from 92 per 100 000 in Texas to 555 per 100 000 in Maine.6*
Each of the 3 methods of obtaining mortality data has significant limitations. All 3 methods only obtain mortality data from states where the Tribal Nation is located. In addition, Tribal Nations in the southern and eastern regions of the United States have opted to use clinic-based denominators that may not reflect the entire Tribal Nation population, as some Tribal citizens may not seek health services through the Tribal health system. No historical residence data are captured within RPMS, making it difficult to accurately define a geographic-based denominator across multiple years. The direct method is dependent on Tribal Nation knowledge of decedents, either through familial notification or through other agreements with the state and/or funeral home. There may be decedents that the Tribal Nations are not aware of. In the closed method, decedent identification is wholly dependent on the health staff knowledge of decedents.
Discussion and Conclusion
Because of the limitations with the various data collection methods and with RPMS, USET TEC staff suspect that there are many deaths for which we do not have information. EVVE FOD will provide access to most states'/jurisdictions' mortality records and is the most complete source of vital records available.7 Upholding the principles of data sovereignty, the TEC is seeking permission from each Tribal Nation to allow RPMS demographic data on all AI/AN patients to be uploaded to EVVE FOD to identify Tribal Nation decedents. All Tribal Nations, even those located in open or direct states, will potentially benefit from utilizing EVVE FOD as it identifies decedents in states other than the one in which the Tribal Nation is located. USET TEC staff will be able to better identify states that have a significant number of Tribal Nation decedents and begin the process of establishing ongoing surveillance relationships with these states. In addition, the TEC will request data as needed from previous years in order to “backfill” any decedents who are currently not in the RPMS Vital Statistics module. Once this project has been implemented, the TEC expects to see a change in mortality rates, particularly for Tribal Nations located in closed states. The TEC is hopeful that Tribal Nations in open/direct states will find their mortality data more robust and meaningful, allowing Tribal Nation leaders and health officials to make informed decisions and implement evidence-based policies and programs that will affect the health and well-being of Tribal Nation citizens.
While the TEC provides Tribal Nation data and statistics to inform policy and programmatic practice, the USET organization as a whole is dedicated to promoting and protecting Tribal Nation sovereignty and the rights of AI/AN citizens. This surveillance project is able to fulfill both missions by returning data to the Tribal Nations for ownership, thus promoting and protecting data sovereignty and allowing Tribal Nation leaders and health officials to make fully informed policy and programmatic decisions based on the most accurate data available.
Implications for Policy & Practice
The TEC is currently expanding this project to utilize Electronic Verification of Vital Events, Fact of Death (EVVE FOD). EVVE FOD is operated by the National Association of Public Health Statistics and Information Systems7 and will allow the TEC to better identify Tribal Nation decedents, resulting in more robust Tribal Nation–specific data. These data will:
- Increase Tribal Nation–specific mortality information and assist in planning prevention and control strategies.
- Strengthen data sovereignty for federally recognized Tribal Nations in the south and eastern regions of the United States.
1. United South and Eastern Tribes, Inc. About USET. http://www.usetinc.org/about-uset
. Accessed January 15, 2019.
2. Freemantle J, Ring I, Arambula Solomon TG, et al. Indigenous mortality
(revealed): the invisible illuminated. Am J Public Health. 2015;105(4):644–652.
3. Espey DK, Jim MA, Richards TB, Begay C, Haverkamp D, Roberts D. Methods for improving the quality and completeness of mortality
data for American Indians and Alaska Natives. Am J Public Health. 2014;104(suppl 3):S286–S294.
4. Thornton R. Tribal membership requirements and the demography of “old” and “new” Native Americans. In: National Research Council (US) Committee on Population; Sandefur GD, Rindfuss RR, Cohen B, eds. Changing Numbers, Changing Needs: American Indian Demography and Public Health. Washington, DC: National Academies Press; 1996:chap 5. https://www.ncbi.nlm.nih.gov/books/NBK233104
. Accessed January 14, 2019
5. Snipp CM. What does data sovereignty imply: what does it look like?. In: Kukutai T, Taylor J, eds. Indigenous Data Sovereignty: Toward an Agenda. Canberra, Australia: Australian National University Press; 2016:39–55.
6. Compressed mortality
file 1999-2016 on CDC WONDER online database. http://wonder.cdc.gov/cmf-icd10.html
. Released June 2017. Accessed January 14, 2019.
7. National Association of Public Health Statistics and Information Systems. Electronic Verification of Vital Events, Fact of Death (EVVE FOD). Baltimore, MD: Centers for Disease Control and Prevention, National Center for Health Statistics; 2014. https://www.naphsis.org/evve-fod
. Accessed September 19, 2018.