Leveraging Resources to Enhance Leveraging Resources to Enhance Data Capacity and Utilization Data Capacity and Utilization in Nebraska in Nebraska Joint Public Health Data Center Joint Public Health Data Center Ming Qu, MD., MEd., PhD Ming Qu, MD., MEd., PhD Ge Lin, PhD Ge Lin, PhD Jianhua Qin, MS Jianhua Qin, MS Jeff Armitage, BS Jeff Armitage, BS Department of Health and Human Services Department of Health and Human Services College of Public Health, UNMC College of Public Health, UNMC 2014 APHA Annual 2014 APHA Annual Meeting, Nov. 18, Meeting, Nov. 18, 2014 2014 New Orleans, New Orleans, Louisiana Louisiana
Transcript
Leveraging Resources to Enhance Data Leveraging Resources to Enhance Data Capacity and Utilization in Nebraska Capacity and Utilization in Nebraska
Joint Public Health Data CenterJoint Public Health Data Center
Brief introduction of the Joint Public Health Data Brief introduction of the Joint Public Health Data Center (JDC)Center (JDC)
Briefly highlight major infrastructure building Briefly highlight major infrastructure building activities of the JDCactivities of the JDC
Report major projects including development of Report major projects including development of master data index and potential utilizationmaster data index and potential utilization
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About the JDCAbout the JDC
• The data center was established in 2011The data center was established in 2011
• A component of the CDC Public Health A component of the CDC Public Health Infrastructure grant Infrastructure grant
Mission StatementMission Statement Build upon the strengths Build upon the strengths
– Public health Agencies (Division of Public Health, Public health Agencies (Division of Public Health, DHHS)DHHS)
The mission of the JDC is to improve public health in The mission of the JDC is to improve public health in Nebraska by enhancing data quality and utilization Nebraska by enhancing data quality and utilization – Enhance data standardization and integrationEnhance data standardization and integration– Provide analysis for public health decision making and Provide analysis for public health decision making and
researchresearch– Improve data disseminationImprove data dissemination
ActivitiesActivities
Update public health data inventoryUpdate public health data inventory Develop and implement query systemDevelop and implement query system Perform data LinkagePerform data Linkage Develop master data indexDevelop master data index Conduct demonstration studiesConduct demonstration studies Assist in internal trainings to improve EPI Assist in internal trainings to improve EPI
and statistics competencies and statistics competencies Provide technical assistance in data linkage Provide technical assistance in data linkage
and analyses and analyses
04/20/2304/20/23
Public Health Data Inventory Public Health Data Inventory
To maintain an up to date data inventory is critical To maintain an up to date data inventory is critical for the enhancement of public health practice and for the enhancement of public health practice and research in Nebraskaresearch in Nebraska
The website of the data inventory allows data The website of the data inventory allows data users to search for and utilize public health data in users to search for and utilize public health data in a more efficient mannera more efficient manner
Public Health Data Inventory Public Health Data Inventory (Countinued)(Countinued)
The updated list of inventory was released The updated list of inventory was released on the center website in May 2013.on the center website in May 2013.More than 100 datasets included in the data More than 100 datasets included in the data inventoryinventoryWebsite:Website:
Data linkageData linkage Data support often involves in linking and updating Data support often involves in linking and updating
datasets among public health programsdatasets among public health programs Hospital discharge data (HDD) are linked toHospital discharge data (HDD) are linked to
– Crash and Driver license for crash outcome analysisCrash and Driver license for crash outcome analysis– Cancer registry data for further case finding, treatment Cancer registry data for further case finding, treatment
updating, outpatient screening, etc updating, outpatient screening, etc – Death records for mortality after hospitalizationDeath records for mortality after hospitalization
Data indexingData indexing Data linkage activities are often overlappingData linkage activities are often overlapping
– E.g., cancer data requests for linking to HDDE.g., cancer data requests for linking to HDD 2005-2009 to HDD2005-2009 to HDD 1995-2010 to HDD1995-2010 to HDD Childhood Cancer to HDDChildhood Cancer to HDD
We also routinely linkWe also routinely link Motor vehicle crash to HDD (with/without driver license)Motor vehicle crash to HDD (with/without driver license) Death to HDD Death to HDD
– Solution: Solution: If we had an index of linked data, we would not repeatedly If we had an index of linked data, we would not repeatedly
link records that had already been linkedlink records that had already been linked Index all those files and update periodicallyIndex all those files and update periodically
Indexing: ChallengesIndexing: Challenges
An unique personal ID is idea to facilitate linkage An unique personal ID is idea to facilitate linkage No textbook like guidelineNo textbook like guideline
data are different from state to statedata are different from state to state
Regulations differ from state to stateRegulations differ from state to state Some states can use SSN to conduct linkage and Some states can use SSN to conduct linkage and
indexingindexing NE: SSN cannot be used “for other purposes except NE: SSN cannot be used “for other purposes except
welfare and social services”welfare and social services”
Create an index to serve as unique personal ID Create an index to serve as unique personal ID cross databases needs some collaboration cross databases needs some collaboration between programs, agencies, and private/non-between programs, agencies, and private/non-profit sectorsprofit sectors
Existing ‘indices’Existing ‘indices’ Birth records Birth records
– Has an Internal mother-ID (could be in reference to SSN or Has an Internal mother-ID (could be in reference to SSN or internal legacy system ID)internal legacy system ID)
– Has mother identifiers (First, M, Maiden-name, and or last-Has mother identifiers (First, M, Maiden-name, and or last-name. DOB)name. DOB)
– The two together can generate a mother index. The two together can generate a mother index.
Immunization RegistryImmunization Registry Hospital discharge data have a patient ID, could be Hospital discharge data have a patient ID, could be
served as an indexserved as an index Cancer registry has a patient ID and Case IDCancer registry has a patient ID and Case ID Death records have death ID—or the index Death records have death ID—or the index Driver license ID + other identifiers can be used as an Driver license ID + other identifiers can be used as an
index index
Development of Mster Data IndexDevelopment of Mster Data Index
Build on personal identification information and Build on personal identification information and existing indicesexisting indices– Name, DOB, Gender, Race? and address +indicesName, DOB, Gender, Race? and address +indices
– Birth to DeathBirth to Death Birth, immunization registry, school health, driver registry, Birth, immunization registry, school health, driver registry,
Marriage, HDD, Injury, Cancer, Parkingson’s Diseases, Marriage, HDD, Injury, Cancer, Parkingson’s Diseases, and Deathand Death
E.g., build an index 1995-2013E.g., build an index 1995-2013 Table 1. Number Children a Mother Has GivenTable 1. Number Children a Mother Has Given
# of Births Given # of Mothers %Total # of Children
Expand Linkage : Expand Linkage : Horizontal Internal datasets are linked to HDD Internal datasets are linked to HDD HDD is a base data setHDD is a base data set Cancer, Crash, Trauma, EMS, Death, PDsCancer, Crash, Trauma, EMS, Death, PDs Create Index table including Generated MDICreate Index table including Generated MDI Perform Index Linkage to HDD one time for allPerform Index Linkage to HDD one time for all Towards an internal registry systems indexingTowards an internal registry systems indexing
– HDD data 2005-2011 had 1.45 million recordsHDD data 2005-2011 had 1.45 million records– Less than 7% of HDD records have race information, a major Less than 7% of HDD records have race information, a major
barrier for racial disparity assessment. barrier for racial disparity assessment. Many datasets within the agency have race/ethnicity Many datasets within the agency have race/ethnicity
and linkage variables (names, address, etc)and linkage variables (names, address, etc)– Cancer registry by patient race/ethnicity (240,000 records)Cancer registry by patient race/ethnicity (240,000 records)– Birth records by mother/father race/ethnicity (500,000 records)Birth records by mother/father race/ethnicity (500,000 records)– Death records by race/ethnicity (100,000+ records)Death records by race/ethnicity (100,000+ records)– Trauma registry (70,000+ records)Trauma registry (70,000+ records)
from hospitals (trauma centers)from hospitals (trauma centers) race is requiredrace is required
– Driver license has self-reported race ( 1.47 million records)Driver license has self-reported race ( 1.47 million records)
Race Index Project ResultsRace Index Project Results
Results: the linkage rates:Results: the linkage rates: 89.7% for Inpatient records (among 1.5 million 89.7% for Inpatient records (among 1.5 million
records)records) 76.0% for Out-patient records (among 17 million 76.0% for Out-patient records (among 17 million
records)records) Using area-based census tract data by race in 2010, we Using area-based census tract data by race in 2010, we
were able to code inpatient race variable to 100%were able to code inpatient race variable to 100%
Both inpatient data and outpatient data (e.g., Both inpatient data and outpatient data (e.g., Current Procedural Terminology codes) can then Current Procedural Terminology codes) can then be linked back to all linkage databases (e.g., be linked back to all linkage databases (e.g., cancer, birth, death, trauma etc)cancer, birth, death, trauma etc)
Master Address IndexMaster Address Index Many datasets within the agency need to be geocodedMany datasets within the agency need to be geocoded
– Birth records, Birth Defect Cancer registry, Trauma registry, Birth records, Birth Defect Cancer registry, Trauma registry, Crash outcomes, HDD Death recordsCrash outcomes, HDD Death records
A lot of addresses are identical (e.g., repeated A lot of addresses are identical (e.g., repeated hospitalization during a short period of time)hospitalization during a short period of time)
Standardized addresses only need to be coded one Standardized addresses only need to be coded one timetime
We coded more than 2 million addresses for above We coded more than 2 million addresses for above databases, and we do not want to repeat another 2 databases, and we do not want to repeat another 2 millionsmillions
A master address index can go hand in hand with the A master address index can go hand in hand with the master data index master data index
Build the master participant index via the Build the master participant index via the race index projectrace index project
Common linkage variablesCommon linkage variables– Name fields, sex, DOB, address fieldsName fields, sex, DOB, address fields
Race is added Addresses are geocoded
Cancer
Birth
Death
Trauma
Driverlicense
From datasets linkage-to-HDD to Indexed data-marts
Birth
Death
Cancer
Trauma
Driverlicense
HDD 05-11
Applications of indexed and federated Applications of indexed and federated data-martsdata-marts
Birth
Death
Cancer
Trauma
Driverlicense
Indexed HDD Chemo and radiation Chemo and radiation therapies rates can be therapies rates can be improved by 15% in cancer improved by 15% in cancer registryregistry
Extreme low-birth weight is Extreme low-birth weight is linked to repeated linked to repeated hospitalization hospitalization
HospitalizationHospitalization– 1 year mortality after 1 year mortality after
hospitalization (Stroke, MI)hospitalization (Stroke, MI)– Rehab for CHD by SESRehab for CHD by SES
Trauma injuries have been Trauma injuries have been linked to poverty and other linked to poverty and other SES indicatorsSES indicators
Motor vehicle crashes have Motor vehicle crashes have been linked to HDD for health been linked to HDD for health disparity assessmentdisparity assessment
Some demonstrative examples Some demonstrative examples
In the following few slides, we demonstrate how In the following few slides, we demonstrate how linked data might provide new insightlinked data might provide new insight
Figure 1. Rehab rate for Coronary Heart Figure 1. Rehab rate for Coronary Heart Disease Patients by Race, 05 to 2011, HDDDisease Patients by Race, 05 to 2011, HDD
Note: race is obtained as result of linkageNote: race is obtained as result of linkage
Figure 2. Lung cancer survival curves by stage and Figure 2. Lung cancer survival curves by stage and comorbidities (e.g., COPD predicts short survival)comorbidities (e.g., COPD predicts short survival)Log-log Survival plot for &strata
Note that comorbidities are not available from NCRNote that comorbidities are not available from NCR
Figure 3 Top 10 hospital Treatment by Figure 3 Top 10 hospital Treatment by census tract poverty in odds ratiocensus tract poverty in odds ratio
Index application 1: Index application 1: the Pregnancy Risk Assessment Monitoring System
(PRAMS)PRAMS) Time 1 birth certificate data are linked to time 2
PRAMS data– Controlling for mother’s race and educational
attainment, Low birth weight (LBW) is associated with: Smokers in both times 1 and 2, New smokers at time 2, Movers to high poverty neighborhoods. Changes in marital status and educational level were not
significant.
Table 2. Mothers with 2 Births of Preterm and LBW Children Table 2. Mothers with 2 Births of Preterm and LBW Children
Preterm Preterm
LBW LBW
Intervention implication:Intervention implication:– For mothers intending to have 2+ children, intervention For mothers intending to have 2+ children, intervention
should target those who had preterm or LBW should target those who had preterm or LBW
2nd child for two children mothersPre term 2nd
Pre term 1st No YesNo 94.71 5.29 73635Yes 57.51 42.49 7425
2nd child for two children mothersLBW_2nd
LBW_1st No YesNo 96.47 3.53 75193Yes 62.18 37.82 5867
SummarySummary
Collaboration among government agency, Collaboration among government agency, research institutions and private organization are research institutions and private organization are essential for success of data center and data essential for success of data center and data integration integration – Establish trust relationshipEstablish trust relationship– Programs willingnessPrograms willingness
InfrasctuetureInfrasctueture– Financial and administrative supportsFinancial and administrative supports– Key staff expertise in data linkageKey staff expertise in data linkage
Demonstration projects showed the values and Demonstration projects showed the values and potential utilization of linked datapotential utilization of linked data
ThanksThanks
Ming Qu, Administrator Ming Qu, Administrator Epidemiology and Health InformaticsEpidemiology and Health Informatics Nebraska Dept. of Health and Human ServicesNebraska Dept. of Health and Human Services (402)3103532(402)3103532 [email protected]@nebraska.gov
