Improving the Accuracy of American Indian Data through Linkage to Tribal Rolls NAPHSIS 2008.

Improving the Accuracy of American Indian Data through Linkage to Tribal

Rolls

NAPHSIS2008

Need for Accurate American Indian Health Data

Public Health Priority IssueKnown Health DisparitiesStrong Tribal Interest in DataRecognized Lack of Reliable Data

Federally Recognized TribesMichigan

Keweenaw Bay ChippewaLac Vieux Desert Band of ChippewaSaginaw ChippewaThe Sault Tribe of ChippewaLittle Traverse Bay Band of OdawaPokegon Band of PotawatomiGun Lake PottawattomiLittle River band of OttawaGrand Traverse Band of Ottawa and ChippewaHannahville PotawatomiHuron PotawatomiBay Mills Chippewa

Concern for Accuracy of American Indian Data

History of UnderreportingExtremely Low Disease RatesSpecial Interest PopulationTribal Health Planners lack Reliable Data8th largest American Indian Population73,295 Michigan American Indians in 2004

Summary of Previous of AI/AN Linkages

Study Incidence (# cases) before match

Incidence (# cases) after match

Change

Washington(1992-93)

153.5 267.5 74%

Minnesota(1988-93)

245.2 390.25 59%

California(1988-92)

89.6 211.0 135.5%

Puget Sound(1974-89)

(137) (233) 70%

Swan, J and Edwards BK. Cancer Rates among American Indians and Alaska Natives: Is there a National Perspective? Cancer. 2003;98(6):1262-1272.

472.3

239.6

62.6

33.154.2

34.7

170.1

53.6

135

58

0

50

100

150

200

250

300

350

400

450

500

All Cancers Lung/Bronchus Rectum/Colon Prostate (men) Breast (women)

Incidence (per 100,000 people)

Cancer Incidence in AIAN and Total U.S. Populations (SEER 1992-2000)

Total U.S. Population AIAN Population

Cancer Incidence in American Indians appears to be MUCH LOWER than Total U.S. Population

Age-Adjus ted Incidence R ate of Malignant C ancer B efore Quality Improvement L inkages (IHS and Tribal)

0

100

200

300

400

500

600

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004Age-

Ajus

ted

Can

cer I

ncid

ence

Rat

e pe

r 100

,000

per

son-

year

s

S tate A I/AN (As R eported) S tate - A ll R aces National S E E R - A ll R aces

CDC and IHS Initiative

Link IHS registry to health dataTarget cancer and death registriesPromote use of improved dataKey contacts are David Espey, CDC/IHS

[email protected] Melissa Jim, CDC/IHS

[email protected]

Assessing and improving the quality ofcancer surveillance data for American Indians

• Link records from state cancer registries/death records with IHS patient registration database

• Identify AI/AN cancer cases/deaths misclassified as non-Native

• Use “improved” data to report cancer burden of American Indians

ApprovalsIHS National IRBCDC National Center for Chronic Disease Prevention and Health PromotionState IRB approvals (i.e. Department of Health & Senior Services, Office of Public Health)

A data quality improvement activity in support of routine public health surveillance

– public health practice not research

Data Management

MOA or state Data Use AgreementData sent to ABQ or travel to stateLinkage done using LinkPlusSend back Match File 3 Contains both IHS & state information

that was used to determine if the match was a link

Create de-identified analysis files

Linkages between IHS and state cancer registries

NV

WA

ORID

MT ND

SDMN

WIMIWY

CA

UTCO

AZ NM

AK

HI

TX

NE

KS

OK

LA

ALMS

MO

IL IN

KY

TN

GA

FL

SC

NC

VAWV

PA

NY

ME

NJCT

MD

OH DE

RI

MAVT

NH

AR

IANV

Registry linkages

Linkage status captured in “IHS Link” variable in NAACCR layout

Surveillance monograph in journal Cancer

Annual Report to the Nation with special section on cancer in AI/AN

Record Linkage between NPCR Program registries and IHS administrative records

0

1000

2000

3000

4000

5000

6000

7000

8000

pre-link added by linkage

0

50

100

150

200

WV

VT

NH

KY

DE IN TN

MA LA RI

PA

SC AL

VA

GA

ME

OH

MD IL AR

Graph with smaller scale for lower 20 NPCR Program registries

CHSDA Non-CHSDA

Michigan NPCR-IHS Linkage Results, 1995-2002

CHSDA Before: 250 individuals After: 612 individuals Difference: 362 individuals that were previously

coded as race other than Al/AN in registry

Non-CHSDA Before: 248 After: 350 Difference: 102 individuals that were previously

coded as race other than AI/AN in registry

Linkages between IHS and state death records

Similar problems of misclassificationMuch larger databasesLess standardization than cancer registries

NV

WA

ORID

MT ND

SDMN

WIMIWY

CA

UTCO

AZNM

AK

HI

TX

NE

KS

OK

LA

ALMS

MO

IL IN

KY

TN

GA

FL

SC

NC

VAWV

PA

NY

ME

NJCT

MD

OH DE

RIMA

VT

NH

AR

IANV

IHS/state death records data linkage

Linkage completedData rec’d – linkage in progressInterest expressed – data not rec’dNot participating

Michigan Division of Vital Records and Health Statistics-IHS Linkage Results,

1990-2002

Before: 5,585 individualsAfter: 5,924 individualsDifference: 339 individuals that were previously coded as race other than AI/AN on death certificate

Linkage of death records from State VS with

administrative records from the IHS(1990-2003)

0

5000

10000

15000

20000

25000

30000

ID UT ND OR MN MT MI NC WA NM CA AZ OK

Pre-link Post-link

Collecting ancestry in 1989 noticeablyimproved the reporting of American Indian

Live Births and Deaths Reported as Native American by Year

139 137 132

335 352324

478 484525

844805

766

0

100

200

300

400

500

600

700

800

900

1986 1987 1988 1989 1990 1991

Year

Nu

mb

er

Deaths

Live Births

62 percent increase

Certificate revised in 1989

150 percent increase

Multiple Responses now Collected

Up to 5 choices for race Collected on Deaths since 2004

450 Native American 1st choice 840 “any mention” in 2005 data

Collected on Births since 2006

Considering Both Parents for Newborns

Increases Cases Significantly

During 2005, 736 Native American Mothers 734 Native American Fathers

1,239 either parent Native American

Additional Change in “Process”

Collecting Principle Tribe

American Indian

Additional Change in “Process”

Little Traverse Bay Ottawa

Beginning to Collect Principle Tribe

Issues

What proportion in Michigan are IHS?IHS recipients more or less likely to be reported as American Indian?Census population issues compound problem?Who should be considered American Indian?

Solution Appears to be Tribal Links

Applies tribal definition of membershipEnables analysis of Tribe as a cohortEmpowers tribal health plannersResolves numerator/denominator concerns

Proposal for Link to Tribal RollsInterested Tribe would Provide Tribal RollLink Tribal Roll to Dataset of Interest: Births Deaths Cancer Registry

Release Results on Tribe to Participating Tribe DCH would provide a de-identified file for analysis

Augment state level data Special reports on American Indian Health

Validate accuracy of case reportsEvaluate principle tribe reporting

Proposed Approach

Develop a Protocol and Data Use AgreementEstablish as a Research Project Assure protection of the data

Develop Approach that Assures Confidentiality Options include:

Provide tribal roll to DCH for Link Identifiable data used only for linkage then destroyed

Jointly conduct link on a portable devise Role loaded/linked/destroyed

DCH to retain which specific cases linkedTribe to receive an agreed de-identified data set

Issues

Need interest of tribal health plannersNeed approval of tribal leadersNeed to assure confidentialityNeed to maximize privacy of tribal roll

Approach

Contact Michigan Intertribal Council Build on history of collaboration

Model after IHS approach Develop tribal interest Organize meeting through Intertribal

Council

Develop clear written agreement Obtain IRB review

Outcomes

De-identified file of linked cases to tribe File is owned by tribe for use in analysis of

cancer incidence and related issues Any results to be released only with

approval of the tribe

Id number field for linked cases to state State can use to improve registry data on

American Indian

Questions using Tribe-specific data:

What types of cancers are most/least common in tribe members?

How do tribal rates of cancer by type compare to other populations?

What stage is cancer in tribal members at diagnosis?

How long do tribal members with cancer live after being diagnosed?

What is the geographic distribution of cancer (rural vs. urban, county-level characteristics)

In Attendance

The Linkage was conducted on 7/20/2007 at the tribal Administration BuildingTribal Staff Present: Database Manager Tribal Registrar Tribal Attorney Environmental Manager

State Staff: MI Cancer Registrar

Study Staff: Study PI from University of Michigan

De-Identified DatasetDrop first, middle, last name, SSN, DOBKeep cancer characteristics (eg. primary site, stage, year of diagnosis, age at diagnosis)Keep some demographics (sex, race and ethnicity as reported, survival time)Keep county-level characteristics (eg. urban/rural, % American Indian, % minorities)

Tribe and State receive a copy of this de-identified dataset.

Access to the state data set must be restricted under the terms of the data use agreement

Other Limitations

Periods of open and closed enrollment–changes in the tribe’s population over time are difficult to interpretEnrollment bias many people who identify as tribal members

may not be in the database are sicker people more likely to enroll than

healthy people?

Detection bias Cancer registry only picks up cancers in

Michigan; if a tribal member was never treated for cancer in MI, they wouldn’t be recorded; tribal roster, on the other hand, is worldwide

Reported as AI/AN to the State Cancer Registry

Linked to IHS patient files

Linked to the TribeEnrollment Roster

366 cases316 individuals







Reported as American Indian to the State Death Registry Linked to Indian Health

Services patient files (IHS)

Linked to TribalMembership roster

56 deaths

154 deaths

200 deaths

128 cases

*IHS began linking with the MI registry in 1995, so this diagram is for 1995 – 2004.

4,975 deaths

Age-Adjus ted Incidence R ate of Malignant C ancer B efore Quality Improvement L inkages (IHS and Tribal)

0

100

200

300

400

500

600

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004Age-

Ajus

ted

Can

cer I

ncid

ence

Rat

e pe

r 100

,000

per

son-

year

s

S tate A I/AN (As R eported) S tate - A ll R aces National S E E R - A ll R aces

Age-Adjus ted Incidence R ate of Malignant C ancer B efore and After HIS Quality Improvement L inkages

0

100

200

300

400

500

600

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004Age-

Ajus

ted

Can

cer I

ncid

ence

Rat

e pe

r 100

,000

per

son-

year

s

S tate A I/AN (As R eported) S tate A I/AN (After IHS L inkage) S tate - A ll R aces National S E E R - A ll R aces

Age-Adjus ted Incidence R ate of Malignant C ancer B efore and After Quality Improvement L inkages (IHS and Tribal)

0

100

200

300

400

500

600

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004Age-

Ajus

ted

Can

cer I

ncid

ence

Rat

e pe

r 100

,000

per

son-

year

s

S tate A I/AN (As R eported) S tate A I/AN (After IHS L inkage) S tate A I/AN (After Tribe L ink)

S tate - A ll R aces National S E E R - A ll R aces

Directions

Develop interest in other tribesAssist with tribal cancer control planPromote the linkage of births and deathsWork toward a periodic linkage routine Establish baseline and monitor trends

Acknowledgements

Intertribal Council of Michigan Rick Haverkate, Health Director Noel Pingatore Elizabeth Kushman

Dan Tadgerson Tribal Environmental Manager

David Espey, CDC/IHSMelissa Jim, CDC/IHSJennifer Johnson, UM Doctoral Candidate

Improving the Accuracy of American Indian Data through Linkage to Tribal Rolls NAPHSIS 2008.

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