Slide 1

Improving Data & Enhancing Access (IDEA-NW) Project

AHRQ grant # R01 HS19972-01

Megan Hoopes, Project Director
Victoria Warren-Mears, P.I.
Thomas Weiser, MD, MPH, Co-P.I.

ideanw@npaihb.org

Logo Northwest Portland Area Indian Health Board, Indian Leadership for Indian Health

Slide 2

Indian health delivery system

• 43 Northwest Tribes
• Outpatient ambulatory care provided by IHS, tribal, and urban clinics
  • No Indian Health Service hospitals
• Gaps in health status data
  • States: Misclassification/missing race data
  • Tribes: limited access to quality hospitalization & other surveillance data on their populations

Map showing where numerous Portland area tribes reside, the largest being Colville and Yakama Nation in Washington, Warm Springs in Oregon, and Coeur d'Alene, Nez Perce, and Shoshones in Idaho.

Slide 3

Record linkage approach

• NW Tribal Registry (NTR)
• Linkages conducted with various public health datasets to evaluate racial misclassification & improve disease/mortality estimates
• Source data: Portland Area IHS Registration file — updated annually
  • Direct identifiers for all AI/AN registered at Northwest IHS or tribal clinics (no health status data)
  • Partnership with urban Indian health center in Seattle
  • Tribe-specific data obtained for special projects
• Results of record linkages used to close the data gap

Slide 4

Specific Aims

1. Conduct probabilistic record linkages between the NTR and health-related datasets in ID, OR, and WA
• Identify racial misclassification of AI/AN.
• Hospital discharge systems, trauma registries, vital statistics, STD/HIV systems, and cancer registries.
2. Disseminate results and share methods
3. Expand NTR to include tribal enrollment lists and Urban Indian Health Organization users
4. Summative report of the IDEA-NW Project

Slide 5

Specific Aims

Image using various graphics to illustrate specific aims of project as described on previous slide. Step 1: Conduct probabilistic record linkages between the N T R and health-related datasets in ID, OR, and WA thereby identifying racial misclassification of A I A N in hospital discharge systems, trauma registries, vital statistics, S T D/H I V systems, and cancer registries. Step 2: Disseminate results and share methods. Step 3: Expand N T R to include tribal enrollment lists and Urban Indian Health Organization users. Step 4: Summative report of the IDEA-NW Project.

Slide 6

Findings and issues

• Washington hospital discharge system (2008 data)
  • Increased ascertainment of AI/AN admissions > 200%
  • Among matched cases, 55% misclassified or unknown race
• Oregon acute & communicable disease registry
  • 40% of AI/AN records misclassified or unknown race
• Idaho, Oregon, and Washington state cancer registries
  • Cumulative misclassification: approx. 30%
• State-TEC-Tribal data sharing issues
  • State epi not familiar with the role & functions of Tribal/Urban EpiCenters

Slide 7

Various photographs of Tribal gatherings.

Slide 8

Thank you