An Overview of Tribal Epidemiology Centers and Collaborations with State Vital Records to Improve Da

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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

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Tribal Epidemiology Centers

• 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

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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)

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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."

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Healthcare Model for AI/AN Populations
I/T/U
Indian Health Service Facilities (IHS)
Tribally-run Health Services
Urban Indian Health Organizations (UIHO)
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Why Vital Statistics Data Is Essential To TEC  

• No formal public health surveillance system
  exists for AI/AN
• Incomplete data in Indian Health Service
  statistics Tribes, Urbans
• 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)

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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

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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

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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.
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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.
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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.
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Great Lakes Epidemiology Project
http//www.glitc.org/epicenter/publications.html
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GLITC Community Health Profile
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GLITC Community Health Profile
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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)

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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

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California Rural Indian Health Board

• Racial disparities a top priority for CRIHB and
  State
• Ongoing communication
• Appropriate confidentiality procedures
• Stable relationships
• Flexible fee schedule

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• Customized reports
• PRAMS collaboration

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• 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

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

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• Tribes good relationship with States
• Communication
• Ongoing data sharing agreements

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• Department of Public Health and EpiCenter
  drafting an agreement for data access to Vital
  Records
• Death Records
• Birth Records
• Linked Birth/Death Records

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• Historical Background
• Previous sharing, knowledge of confidentiality
  protocols
• Communication
• Education
• Mutual Understanding of Health Department and
  EpiCenter Purpose and Needs

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The Challenge(s)

• Vital statistics data show significant
  disparities between AI/AN and all race
  populations
• Socioeconomic indicators
• Maternal and child health
• Mortality
• Access to data
• Racial misclassification errors

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Racial Misclassification and Data Quality

• Documented miscoding of AI/AN race
• Greater in urban areas
• No national standards
• Adjustments vary
• IHS (12)
• National Center for Health
  Statistics (37)
• Disparities found may be even greater due to
  these errors

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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

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Thank you!

• Chris Compher ccompher_at_usetinc.org
• Alice Park alicep_at_uihi.org