An Overview of Tribal Epidemiology Centers and Collaborations

An Overview of Tribal Epidemiology Centers and Collaborations with State Vital Records to Improve Data Quality and Address Emerging Issues Judith Thierry, D. O. , MPH, Indian Health Service Mei Lin Castor, MD, MPH, Urban Indian Health Institute Alice Park, MPH, Urban Indian Health Institute Chris Compher, MHS, United South and Eastern Tribes

Tribal Epidemiology Centers (TEC) are American Indian and Alaska Native (AI/AN) programs working with Tribal entities and urban AI/AN communities by managing public health information systems, investigating diseases of concern, managing disease prevention and control programs, responding to public health emergencies, and coordinating these activities with other public health authorities

History of the TEC Started in 1996 Core funding from Indian Health Service (IHS) Focus to build public health capacity in AI/AN communities – AI/AN organizations with technical assistance from IHS – Identify health status objectives and services needed to achieve them Currently 11 TEC nationwide – Ten regionally focused – One nationwide-focus (urban AI/AN)

Authorization of TEC Public Health Activities “[Grantee] is acting under a cooperative agreement with the Indian Health Service to operate a Tribal Epidemiology Center, which is authorized by Section 214(a) (1), Public Law 94 -437, Indian Health Care Improvement Act, as amended by P. L. 573. In the conduct of this public health activity, the [grantee] may collect or receive protected health information for the purpose of preventing or controlling disease, injury or disability, including, but not limited to, the reporting of disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and public health interventions for the tribal communities that they serve. Further, the Indian Health Service considers this to be a public health activity for which disclosure of protected health information by covered entities is authorized by 45 CFR 164. 512(b) of the Privacy Rule. "

Healthcare Model for AI/AN Populations I/T/U Indian Health Service Facilities (IHS) Tribally-run Health Services Urban Indian Health Organizations (UIHO)

SIHB Epi Center NPAIHB Epi Center American Indian and Alaska Native Population* By State with Tribal Epidemiology Centers ² WA ² OR M/W TLC Epi Center MT ND ² ID WY ² NV CRIHB Epi Center MN UT KS ² AZ ² öNM ² ² OK ANTHC Epi Center ME NY PA OH IN RI CT MO ² TN NC AR SC AL HI * Census 2000, One race (AI/AN) alone MD USET Epi Center GA FL NNDOH Epi Center DE VA KY MS NJ WV LA ITCA Epi Center ± NH MA IA TX AK VT MI IL CO GLITC Epi Center ² WI SD NE CA NP Epi Center OKCAITHB Epi Center ö = IHS Division of Epi ² = Tribal Epi Centers AI/AN Population by State, 2000 100, 00 to 333, 400 50, 000 to 99, 999 10, 000 to 49, 999 1, 713 to 9, 999

Why Vital Statistics Data Is Essential To TEC No formal public health surveillance system exists for AI/AN ü Incomplete data in Indian Health Service statistics – Tribes, Urbans ü 125 AI/AN MCH publications, 1984 -2003 Small numbers relative to general population Population-based data source National survey methods preclude analysis of AI/AN data (PRAMS, YRBS, BRFSS)

Current TEC Projects Using Vital Statistics Data Infant Mortality Project (USET) Emerging Issues – Maternal Alcohol Use – Infant Mortality – SIDS Factsheets Urban AI/AN Health Status Report Community Health Profiles

Urban AI/AN Health Status Report First National Urban Indian Health Status Report Covered Locally and Nationally in the Press Presented to White House and other government officials

Alcohol use during pregnancy by service areas, ten-year average, 1991 -2000 Notes: Results pertain to UIHO service areas with 10 or more to births to AI/AN mothers who consumed alcohol during pregnancy. *Significant difference between rates for AI/AN and all races combined. Source: U. S. Centers for Health Statistics.

Infant Mortality by UIHO Service Areas Six-year Averages, 1995 -2000 Source: U. S. Centers for Health Statistics Notes: Results pertain to UIHO service areas with 10 or infant deaths to AI/AN mothers. *Significant difference between rates for AI/AN and all races combined. “Partial” refers to the inclusion of only those counties with a 1990 population of 250, 000 or more.

Chronic Liver Disease Mortality by UIHO Service Areas Ten-year Averages, 1990 -1999 Source: U. S. Centers for Health Statistics. Notes: Results pertain to UIHO service areas with 10 or more AI/AN deaths due to chronic liver disease. *Significant difference between rates for AI/AN and all races combined.

Great Lakes Epidemiology Project

GLITC Community Health Profile

Highlighting Collaborations California Rural Indian Health Board (California) Northern Plains Tribal Epidemiology Center (North Dakota, South Dakota, Nebraska, Iowa) Great Lakes Inter-Tribal Council (Michigan, Minnesota, Wisconsin) Alaska Native Tribal Health Consortium (Alaska)

California Rural Indian Health Board Receive mortality, natality, linked infant death, patient discharge [hospital], Cancer SEER, Medicaid (raw data, county/zipcode level) Ongoing data-sharing agreement Receive IHS and state data annually for linkage Racial misclassification

California Rural Indian Health Board Racial disparities a top priority for CRIHB and State Ongoing communication Appropriate confidentiality procedures Stable relationships Flexible fee schedule

Customized reports PRAMS collaboration

Communication, clarity and responsibility in analytic uses Taking lead in PRAMS application Relationship with other state entities using vital data BUT: – Some tribes report difficulty in accessing data from states

Data sharing agreements Request data annually – Birth/death file – STD/communicable disease – WIC Cost varies by state

Tribes good relationship with States Communication Ongoing data sharing agreements

Department of Public Health and Epi. Center drafting an agreement for data access to Vital Records – Death Records – Birth Records – Linked Birth/Death Records

Historical Background – Previous sharing, knowledge of confidentiality protocols Communication Education – Mutual Understanding of Health Department and Epi. Center Purpose and Needs

The Challenge(s) Vital statistics data show significant disparities between AI/AN and all race populations üSocioeconomic indicators üMaternal and child health üMortality • Access to data • Racial misclassification errors

Racial Misclassification and Data Quality Documented miscoding of AI/AN race üGreater in urban areas No national standards Adjustments vary üIHS (12%) üNational Center for Health Statistics (37%) Disparities found may be even greater due to these errors

Recommendations 1. Advocating for inclusion/identification of AI/AN in existing surveillance systems 2. Accessing data from various systems/sources 3. Assuring data quality 4. Improving relationships with other governmental agencies/ collaborating with other agencies

Thank you! Chris Compher ccompher@usetinc. org Alice Park alicep@uihi. org