The Tohono O'odham Nation (TON) The Tohono O'odham Nation (TON) Comprehensive CancerComprehensive Cancer Planning Grant “Data” Planning Grant “Data”

ExperienceExperience

Joseph B. Hawes MD, MPHJoseph B. Hawes MD, MPH

TON Comprehensive CancerTON Comprehensive Cancer Planning (CCP) Grant Planning (CCP) Grant

• Overarching Goal – decreasing the burden of Overarching Goal – decreasing the burden of four selected cancers; breast, cervix, four selected cancers; breast, cervix, prostate and colorectal, on the Tohono prostate and colorectal, on the Tohono O'odham Nation (TON) populationO'odham Nation (TON) population

• Data needs - Data needs - data sources reporting on, data sources reporting on, screening, stage at diagnosis, treatment and screening, stage at diagnosis, treatment and management of cancer casesmanagement of cancer cases

““Finding and Using Data to Finding and Using Data to Serve Disparate Populations” Serve Disparate Populations” 

2009 Collaborative NCCCP & NPCR Conference 2009 Collaborative NCCCP & NPCR Conference April 15-17, CDC , Atlanta, GA. April 15-17, CDC , Atlanta, GA. 

Data DataData

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

Surveillance System Mechanism

• Data collection

• Data Analysis

• Dissemination of Findings

• Action activities

Finding and Using Data to Finding and Using Data to Serve Disparate Populations. Serve Disparate Populations. 

““The Data Maze”The Data Maze”

2009 Collaborative NCCCP & NPCR Conference 2009 Collaborative NCCCP & NPCR Conference April 15-17, Atlanta, GA.  April 15-17, Atlanta, GA. 

Finding and Using Data to Serve Finding and Using Data to Serve Disparate PopulationsDisparate Populations

DisparateDisparate – distinct, dissimilar, different – distinct, dissimilar, different from main streamfrom 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 ?

Finding Cancer Data for Distinct Finding Cancer Data for Distinct Populations in “Traditional” DataPopulations in “Traditional” Data SetsSets

Objectives:Objectives:• Adequacy of mainstream /traditional cancer Adequacy of mainstream /traditional cancer

data setsdata sets

• A process for identification of TON A process for identification of TON population in existing data setspopulation in existing data sets

• Highlight challenges to success Highlight challenges to success

• RecommendationsRecommendations

Health Status Information on The Health Status Information on The Distinct Population - TONDistinct Population - TON

National Cancer Information SourcesNational 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 Operates and maintains a population-based cancer registry for the entire state of New Mexico and the American Indian population of entire state of New Mexico and the American Indian population of ArizonaArizona

Finding Cancer Status Information Finding Cancer Status Information on TON populationon TON population

State Cancer State Cancer RegistryRegistry

Hospital Discharge

Tribal Registry

New Mexico Tumour Registry

*BRFSS

Vital Statistics

TON population

Indian Health Services

Cancer Information Generating Cancer Information Generating StatusStatus

• Cancer screeningCancer screening

• Incidence and prevalence countIncidence and prevalence count

• Stage at diagnosisStage at diagnosis

• Management & treatmentManagement & treatment

Challenges to the Tohono O'odham Challenges to the Tohono O'odham Nation’s CCP Data EffortNation’s CCP Data Effort

• Accessing data sources identifiedAccessing data sources identified

• Extracting information from accessible data Extracting information from accessible data sourcessources

• Obtaining accurate numerators and Obtaining accurate numerators and denominatorsdenominators

• Dissemination of information on cancer Dissemination of information on cancer status of Arizona’s American Indian status of Arizona’s American Indian populationpopulation

   • Representation of non SEER Representation of non SEER American American

Indian Indian populations in national statistics populations in national statistics on Cancer status in on Cancer status in American IndiansAmerican Indians

• Building the capacities of tribes to Building the capacities of tribes to generate BRFSS like informationgenerate BRFSS like information

Challenges to the NCCCP & NPCR Challenges to the NCCCP & NPCR CollaborativeCollaborative

RecommendationsRecommendations

• Use of demographic identifiers, similar to Use of demographic identifiers, similar to those on Birth and Death certificates, on all those on Birth and Death certificates, on all state and IHS health data reporting formsstate and IHS health data reporting forms

• Create a unit within the Tribe’s health system Create a unit within the Tribe’s health system with the functional capacity of the state’s with the functional capacity of the state’s local health departmentlocal health department

Getting out of the Data MazeGetting out of the Data Maze

Thank You!Thank You!

The EndThe End