1. The Tohono O'odham Nation (TON) Comprehensive Cancer Planning Grant “Data” Experience Joseph B. Hawes MD, MPH

2. TON Comprehensive Cancer Planning (CCP) Grant Overarching Goal – decreasing the burden of four selected cancers; breast, cervix, prostate and colorectal, on the Tohono O'odham Nation (TON) populationOverarching Goal – decreasing the burden of four selected cancers; breast, cervix, prostate and colorectal, on the Tohono O'odham Nation (TON) population Data needs - data sources reporting on, screening, stage at diagnosis, treatment and management of cancer casesData needs - data sources reporting on, screening, stage at diagnosis, treatment and management of cancer cases

3. “Finding and Using Data to Serve Disparate Populations” “Finding and Using Data to Serve Disparate Populations” 2009 Collaborative NCCCP & NPCR Conference April 15-17, CDC, Atlanta, GA. April 15-17, CDC, Atlanta, GA. Data Data

4. Data and Decision Making Science based information – key to the decision making process Data - key component that drives the information generating process Surveillance system – mechanism that moves the data through the process

5. Surveillance System Mechanism Data collection Data Analysis Dissemination of Findings Action activities

6. Finding and Using Data to Serve Disparate Populations. Finding and Using Data to Serve Disparate Populations. “The Data Maze” 2009 Collaborative NCCCP & NPCR Conference April 15-17, Atlanta, GA. April 15-17, Atlanta, GA.

7. Finding and Using Data to Serve Disparate Populations Finding and Using Data to Serve Disparate Populations Disparate – distinct, dissimilar, different from main stream What constitutes a disparate population?What constitutes a disparate population? Distinct populations ?Distinct populations ? Main stream/Traditional – Data sets ?Main stream/Traditional – Data sets ?

8. Finding Cancer Data for Distinct Populations in “Traditional” Data Sets Objectives: Adequacy of mainstream /traditional cancer data setsAdequacy of mainstream /traditional cancer data sets A process for identification of TON population in existing data setsA process for identification of TON population in existing data sets Highlight challenges to successHighlight challenges to success RecommendationsRecommendations

9. Health Status Information on The Distinct Population - TON National Cancer Information Sources National Program of Cancer Registries (NPCR)National Program of Cancer Registries (NPCR) *The SEER Program Cancer Registry*The SEER Program Cancer Registry New Mexico Tumor RegistryNew Mexico Tumor Registry *Operates and maintains a population-based cancer registry for the entire state of New Mexico and the American Indian population of Arizona

10. Finding Cancer Status Information on TON population State Cancer Registry Hospital Discharge Tribal Registry New Mexico Tumour Registry * BRFSS Vital Statistics TON population Indian Health Services

11. Cancer Information Generating Status Cancer screeningCancer screening Incidence and prevalence countIncidence and prevalence count Stage at diagnosisStage at diagnosis Management & treatmentManagement & treatment

12. Challenges to the Tohono O'odham Nation’s CCP Data Effort Accessing data sources identifiedAccessing data sources identified Extracting information from accessible data sourcesExtracting information from accessible data sources Obtaining accurate numerators and denominatorsObtaining accurate numerators and denominators Dissemination of information on cancer status of Arizona’s American Indian populationDissemination of information on cancer status of Arizona’s American Indian population

13. Representation of non SEER American Indian populations in national statistics on Cancer status in American IndiansRepresentation of non SEER American Indian populations in national statistics on Cancer status in American Indians Building the capacities of tribes to generate BRFSS like informationBuilding the capacities of tribes to generate BRFSS like information Challenges to the NCCCP & NPCR Collaborative

14. Recommendations Use of demographic identifiers, similar to those on Birth and Death certificates, on all state and IHS health data reporting formsUse of demographic identifiers, similar to those on Birth and Death certificates, on all state and IHS health data reporting forms Create a unit within the Tribe’s health system with the functional capacity of the state’s local health departmentCreate a unit within the Tribe’s health system with the functional capacity of the state’s local health department

15. Getting out of the Data Maze Thank You! The End