improving perinatal data— the state perspective isabelle horon, dr.p.h. director, vital statistics...

Improving Perinatal Data—Improving Perinatal Data—the State Perspectivethe State Perspective

Isabelle Horon, Dr.P.H.Isabelle Horon, Dr.P.H.Director, Vital Statistics AdministrationDirector, Vital Statistics Administration

Maryland Department of Health and Mental HygieneMaryland Department of Health and Mental HygieneMarch 2, 2005March 2, 2005

© 2001 By Default!

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Slide 2

Vital StatisticsVital Statistics

What are they?What are they?

What’s right?What’s right?

What’s wrong?What’s wrong?

What can we do?What can we do?

© 2001 By Default!


Slide 3

Representing states on behalf of NAPHSISRepresenting states on behalf of NAPHSIS

– National Association for Public Health Statistics and National Association for Public Health Statistics and Information SystemsInformation Systems

– Association of state vital records and public health Association of state vital records and public health statistics offices representing 50 states, 5 U.S. territories, statistics offices representing 50 states, 5 U.S. territories, NYC and D.C.NYC and D.C.

– Mission: To provide national leadership to improve public Mission: To provide national leadership to improve public health information through strengthening and integrating health information through strengthening and integrating vital records, health statistics and other health vital records, health statistics and other health information.information.

Vital statisticsVital statistics

Data relating to births, deaths, Data relating to births, deaths, marriages and divorcesmarriages and divorces

Three systemsThree systems

– Civil registration systemCivil registration system

– Records management systemRecords management system

– Public health data systemPublic health data system

How are vital statistics collected?How are vital statistics collected?

State functionState function

Recording of vital events is the responsibility of Recording of vital events is the responsibility of the jurisdiction in which the event occursthe jurisdiction in which the event occurs – 50 states50 states– 5 U.S. territories5 U.S. territories– NYCNYC– DCDC

Contracts to provide data to federal Contracts to provide data to federal agenciesagencies

NCHSNCHS

SSASSA

CPSCCPSC

NIOSHNIOSH

What’s right with vital What’s right with vital statistics?statistics?

Critical source of public health dataCritical source of public health data

(Just about) complete reporting(Just about) complete reporting

(Mostly) consistent data among jurisdictions(Mostly) consistent data among jurisdictions

© 2001 By Default!


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Data qualityData quality

No standard national data setNo standard national data set

UnderutilizedUnderutilized

Antiquated data systemsAntiquated data systems



– Timeliness, completeness, accuracyTimeliness, completeness, accuracy

– Poor reporting of certain eventsPoor reporting of certain events

Percentage of Birth Certificates Filed Within 72 Hours of Birth, Maryland,

Selected Months, 1997-1998.

Decem

ber 1

997

June

199

8

July

1998

Augus

t 199

8

Octobe

r 199

8

Novem

ber 1

998

Month and year

0

20

40

60

80

100

Per

cent

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Percentage of Births to Women Who Received Late* or No Prenatal Care, Maryland, 1991-97.

*Care beginning in the third trimester

3.5 3.43.6

3.4

3

2.6 2.6

1991 1992 1993 1994 1995 1996 1997

Year

0

1

2

3

4

Per

cent

Percentage of Birth Certificates With Incomplete Prenatal Care Information, Maryland, 1991-97.

11.2

9.4

7

5.4

7.9

10.911.5

1991 1992 1993 1994 1995 1996 1997

Year

0

2

4

6

8

10

12

14

Per

cent

Percentage of Birth Certificates Missing Information on the Month Prenatal Care Began

December 1997 Births11.5

0000.10.20.20.20.40.50.80.91.21.51.71.82.22.52.63.344.64.64.74.74.84.9

7.68

9.810.510.611.912.5

30.435.2

73.489.7

All Maryland hospitals

Hospital 52Hospital 67Hospital 71Hospital 76Hospital 50Hospital 56Hospital 61Hospital 64Hospital 38Hospital 66Hospital 40Hospital 58Hospital 43Hospital 79Hospital 86Hospital 44Hospital 68Hospital 78Hospital 59Hospital 57Hospital 48Hospital 62Hospital 22Hospital 69Hospital 65Hospital 81Hospital 80Hospital 60Hospital 84Hospital 42Hospital 31Hospital 85Hospital 53Hospital 37Hospital 21Hospital 33Hospital 74

0 20 40 60 80 100

Percent

© 2001 By Default!


Slide 13Percentage of Births to Women Who Received Late* or

No Prenatal Care, Maryland, 1997-2003.

*Care beginning in the third trimester

2.62.9

3.1 3.1

3.7 3.63.8

1997 1998 1999 2000 2001 2002 2003

Year

0

1

2

3

4

5

Per

cent

Percentage of Birth Certificates With Incomplete Prenatal Care Information, Maryland, 1997-2003.

11.5

4.83.9

2.7 2.41.9

1.3

1997 1998 1999 2000 2001 2002 2003

Year

0

2

4

6

8

10

12

14

Per

cent

© 2001 By Default!


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Efforts to improve perinatal data in Efforts to improve perinatal data in MarylandMaryland

Monthly report cardsMonthly report cards

Medical record auditsMedical record audits

Fetal/infant death field staffFetal/infant death field staff

© 2001 By Default!


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– Timeliness, completeness, accuracyTimeliness, completeness, accuracy

– Poor reporting of certain eventsPoor reporting of certain events• Fetal deathsFetal deaths• Early infant deathsEarly infant deaths

Poor fetal mortality dataPoor fetal mortality data

Poorly collected and reported in many jurisdictionsPoorly collected and reported in many jurisdictions

Improved Maryland data showed:Improved Maryland data showed:

– More fetal deaths than infant deathsMore fetal deaths than infant deaths– Misclassification of fetal/early infant deathsMisclassification of fetal/early infant deaths– Trends differ for fetal and infant deathsTrends differ for fetal and infant deaths

© 2001 By Default!


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Black Fetal and Infant Mortality Rates by Maternal Age, Black Fetal and Infant Mortality Rates by Maternal Age, Maryland, 2000-2002.Maryland, 2000-2002.

0

5

10

15

20

25

30

<18 18-19 20-24 25-29 30-34 35-39 40-44

Maternal age

Rat

e

Fetal deaths

Infant deaths

© 2001 By Default!


Slide 18

Black Fetal and Infant Mortality Rates by Maternal Black Fetal and Infant Mortality Rates by Maternal Education, Maryland, 2000-2002.Education, Maryland, 2000-2002.

0

5

10

15

20

<12 12 13-15 16+

Maternal education

Rat

e

Fetal deaths

Infant deaths

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Poor reporting of infant deaths at Poor reporting of infant deaths at early gestationsearly gestations

Contract with NCHS requires states to:Contract with NCHS requires states to:

– Link every infant death record with a corresponding birth Link every infant death record with a corresponding birth recordrecord

– Follow up of all live born infants with birth weights <750 Follow up of all live born infants with birth weights <750 gramsgrams

Infant mortality rate by birth Infant mortality rate by birth weight, Maryland, 2002.weight, Maryland, 2002.

935.7

454.5

131

50

0

200

400

600

800

1000

<500 gms. 500-749 gms. 750-999 gms. 1000-1499gms.

Birth weight

Rate

per

1,0

00 l

ive b

irth

s

Infant mortality rate by birth weight Infant mortality rate by birth weight and place of deliveryand place of delivery

935.7

454.5

131

50

352.9

235.3

51.317.5

0

200

400

600

800

1000

<500 gms. 500-749 gms. 750-999 gms. 1000-1499gms.

Rate

per

1,0

00 l

ive b

irth

s

Maryland Neighboring jurisdiction

© 2001 By Default!


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– Timeliness, completeness, accuracyTimeliness, completeness, accuracy– Poor reporting of certain eventsPoor reporting of certain events


© 2001 By Default!


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Revised U.S. StandardRevised U.S. StandardBirth CertificateBirth Certificate

New itemsNew items Modified itemsModified itemsFertility therapyFertility therapyWIC during pregnancyWIC during pregnancyInfections during pregnancyInfections during pregnancyMaternal morbidityMaternal morbidityBreast feedingBreast feedingSource of payment for the Source of payment for the deliverydelivery

Race and education of Race and education of parentsparentsCigarette smoking Cigarette smoking Prenatal carePrenatal careMethod of deliveryMethod of deliveryCongenital anomaliesCongenital anomalies

© 2001 By Default!


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Revised U.S. StandardRevised U.S. StandardFetal Death CertificateFetal Death Certificate

New itemsNew items Modified itemsModified itemsFertility therapyFertility therapyWIC during pregnancyWIC during pregnancyInfections during pregnancyInfections during pregnancyMaternal morbidityMaternal morbiditySource of payment for the Source of payment for the deliverydelivery

Race and education of Race and education of parentsparentsCigarette smoking Cigarette smoking Prenatal carePrenatal careMethod of deliveryMethod of deliveryCongenital anomaliesCongenital anomaliesCause of deathCause of death

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Data qualityData quality– Timeliness, completeness, accuracyTimeliness, completeness, accuracy– Poor reporting of certain eventsPoor reporting of certain events


Data are underutilizedData are underutilized– Traditional role was to collect data for statistical reports Traditional role was to collect data for statistical reports

for state and federal agenciesfor state and federal agencies

– Need to expand functionsNeed to expand functions

Vital statistics—3 4 systemsVital statistics—3 4 systems

Civil registration systemCivil registration system

Records management systemRecords management system

Public health data systemPublic health data system

Public health surveillance systemPublic health surveillance system

Data surveillance systemData surveillance system

Vital records systems should evolve into perinatal Vital records systems should evolve into perinatal data surveillance systemsdata surveillance systems

– Should allow states to monitor trends as data are Should allow states to monitor trends as data are collectedcollected

– Should allow states to identify problems in real timeShould allow states to identify problems in real time• Immediate identification of areas with high rates of anomalies, Immediate identification of areas with high rates of anomalies,

infant deaths, etc.infant deaths, etc.• Tracking of at-risk infantsTracking of at-risk infants

– Should allow for the collection of additional perinatal dataShould allow for the collection of additional perinatal data

– Should allow for routine linkage with other data setsShould allow for routine linkage with other data sets

Expanded use of data needs to Expanded use of data needs to happen at the state levelhappen at the state level

Only states collect data from the sourceOnly states collect data from the source

Only states have identifiersOnly states have identifiers

Only states have access to other data setsOnly states have access to other data sets

© 2001 By Default!


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Underutilized at state levelUnderutilized at state level

Antiquated data systemsAntiquated data systems

Consequences of antiquated data Consequences of antiquated data collection systemscollection systems

Limit efforts to improve data qualityLimit efforts to improve data quality

Create difficulties in moving to revised certificatesCreate difficulties in moving to revised certificates

Limit efforts to expand uses of dataLimit efforts to expand uses of data

History of reengineeringHistory of reengineering

States knew they had to update systemsStates knew they had to update systems– Systems were antiquatedSystems were antiquated– Needed to implement revised standard certificatesNeeded to implement revised standard certificates

Early attempts were often unsuccessfulEarly attempts were often unsuccessful

‘‘Every man for himself” approach Every man for himself” approach wasn’t workingwasn’t working

Repetitive costsRepetitive costs– DollarsDollars– Human resourcesHuman resources– TimeTime

Lack of technical resources in statesLack of technical resources in states

High risk borne by each state individuallyHigh risk borne by each state individually

Failed to build on collective expertise of statesFailed to build on collective expertise of states

Reengineering strategyReengineering strategy

Development of a national, model vital statistics Development of a national, model vital statistics systemsystem

– Collaborative effort of NAPHSIS, NCHS, SSACollaborative effort of NAPHSIS, NCHS, SSA

• Project teams produced conceptual framework for building Project teams produced conceptual framework for building modelsmodels

– Goal: the development of state-specific systems that use Goal: the development of state-specific systems that use the same standards to record the same information in the the same standards to record the same information in the same manner by adhering to the same business rulessame manner by adhering to the same business rules

• Standardized system concept that would meet at least 85% of Standardized system concept that would meet at least 85% of the reengineering needs of any jurisdictionthe reengineering needs of any jurisdiction

Benefits of collaborative effort to Benefits of collaborative effort to create a national modelcreate a national model

Greater probability of successGreater probability of success– Shared expertise and best practicesShared expertise and best practices

Faster implementationFaster implementation

Significantly lower costsSignificantly lower costs– Dollars to statesDollars to states– Human resourcesHuman resources

What will reengineered systems What will reengineered systems allow us to do?allow us to do?

Collect better quality dataCollect better quality data– More timelyMore timely– More complete More complete – More accurateMore accurate

Uniformly employ national standardsUniformly employ national standards

Implement revised certificates/data setsImplement revised certificates/data sets

Enhance the role of vital statistics as a Enhance the role of vital statistics as a surveillance systemsurveillance system

© 2001 By Default!


Slide 36

South Dakota Electronic Vital South Dakota Electronic Vital Records and Screening SystemRecords and Screening System

Web-based system collects:Web-based system collects:– Vital records dataVital records data– Metabolic screening dataMetabolic screening data– Hearing screening dataHearing screening data– Immunization dataImmunization data

ResultsResults– Improved timeliness, completeness and accuracy of vital Improved timeliness, completeness and accuracy of vital

records datarecords data– Automatic linkage of vital record data with metabolic Automatic linkage of vital record data with metabolic

screening, hearing screening and immunization datascreening, hearing screening and immunization data– Immediate identification of unscreened infantsImmediate identification of unscreened infants– Substantial increase in percentage of screened infantsSubstantial increase in percentage of screened infants

Reengineering—where are we?Reengineering—where are we?

Functional requirements for birth and death Functional requirements for birth and death registration have been establishedregistration have been established

Have national model; being implemented in Have national model; being implemented in selected statesselected states

Lack of funding to complete processLack of funding to complete process

What is our vision?What is our vision?

Collection of timely, complete, accurate dataCollection of timely, complete, accurate data

Reengineered, web-based data collection systems that would allow for:Reengineered, web-based data collection systems that would allow for:– Immediate electronic transfer to state vital records officesImmediate electronic transfer to state vital records offices– Immediate transfer to other health dept. programs (immunization registries, hearing Immediate transfer to other health dept. programs (immunization registries, hearing

screening, birth defects)screening, birth defects)– Timely transfer of out of state dataTimely transfer of out of state data– Timely sharing of data with federal partnersTimely sharing of data with federal partners

Immediate linkage of birth and infant death dataImmediate linkage of birth and infant death data

Linkage with other data setsLinkage with other data sets

Continued evolution from ‘vital registration system’ to ‘surveillance Continued evolution from ‘vital registration system’ to ‘surveillance system’system’

Summary—what do we need to be Summary—what do we need to be successful?successful?

$$$ for reengineered systems based on the national model $$$ for reengineered systems based on the national model in all statesin all states

$$$ to implement revised certificates in all states$$$ to implement revised certificates in all states

$$$ to improve data quality$$$ to improve data quality– National training coordinating centerNational training coordinating center– Technical assistance to states to improve collection and analysis of perinatal dataTechnical assistance to states to improve collection and analysis of perinatal data

NAPHSIS wish list:NAPHSIS wish list:– Support to continue reengineering work Support to continue reengineering work – Support to develop a national training coordinating centerSupport to develop a national training coordinating center– Support to provide technical assistance to states to improve data qualitySupport to provide technical assistance to states to improve data quality

For more information about NAPHSIS and/or the reengineering effort, contact:

Jan Markowitz, Ph.D., Acting Director National Association for Public Health Statistics

and Information Systems801 Roeder Road

Suite 650Silver Spring, MD 20910

Telephone: (301) 563-6001Email:[email protected]

improving perinatal data— the state perspective isabelle horon, dr.p.h. director, vital statistics...

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vital statistics data

divorces data

perinatal data

consistent data

standard national data

poor fetal mortality

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