Measuring Reproductive Health Outcomes: Vital Records are Vital Patricia W. Potrzebowski, Ph.D. Executive Director, NAPHSIS

Acknowledgment Jack C. Smith, M.S. Division of Reproductive Health

Vital Records Are Needed to Measure Reproductive Health Outcomes Teen pregnancy Infant and perinatal mortality Abortion surveillance (ITOP) Maternal mortality, complications of pregnancy Preterm birth, SUID, ART, PRAMS, prenatal care, etc.

Overview About Vital Records About NAPHSIS & Our Members Improving Vital Records Strengthening Partnerships

About Vital Records

Jurisdiction Responsibility for Vital Event Registration All vital events that occur within each of the 57 jurisdictions (50 states, NYC, DC, 5 territories): Live births Deaths Fetal deaths (based on length of gestation/birth weight) Induced Terminations of Pregnancy (ITOP) Marriages and Divorces

Vital Records Provide the Foundation for Public Health From records to data Evaluating progress/outcomes Effective intergovernmental partnership VSCP: data for National Vital Statistics System National Death Index for research Enumeration at Birth: issue SSN Fact of Death reporting to SSA for benefit administration

Two Purposes of Vital Records Legal/administrative uses (civil registration) Proof of citizenship, age, parentage Used to obtain identity documents, settle estates, obtain benefits Public health/statistical uses Measure outcomes Identify risk factors Conduct research

Process for Registering Vital Events and Preparing Data for Release Many steps Many actors Complex systems Differs by type of event Multiple data quality reviews National data depend on slowest jurisdiction

Birth Registration Data Flow 1.Birth occurs 2.Hospital reports to vital records office (VRO) 3.VRO reviews data for quality If needed, VRO follows up with hospital 4.VRO shares data with mother’s state of residence 5.VRO submits birth data to NCHS 6.NCHS reviews data for quality If needed, NCHS follows up with VRO If needed, VRO follows up with hospital 7.VRO submits final complete year end data to NCHS 8.NCHS conducts final data quality review If needed, NCHS follows up with VRO If needed, VRO follows up with hospital 9.VRO/NCHS each release aggregate vital statistics data

Death Registration Data Flow Funeral home reports decedent’s demographic data Attending physician certifies and reports natural causes of death Medical examiner/coroner certifies and reports external causes (homicide, suicide, unintentional injuries) and unknown manner or unattended death Same process as birth; more data sources

Other Vital Record Functions Certified copy issuance Amendments and adoptions Paternity acknowledgment Delayed records Statistical reports Record preservation Security – identity theft and fraud prevention

About NAPHSIS & Our Members

National Association for Public Health Statistics and Information Systems Organized vital records jurisdictions: 50 states, NYC, DC, 5 territories About 275 members 7.5 FTE staff + consultants ASTHO affiliate

NAPHSIS Vision An accurate, timely, and secure record of all vital events in the nation

Mission NAPHSIS provides national leadership for both vital records and related information systems in order to establish and protect individual identity and improve population health.

Strategic Objectives Advocate nationally for member jurisdictions Negotiate federal contracts for member jurisdictions(NCHS/CDC and SSA) Ensure effective stewardship for VR in HIE/EHR environment Strengthen organizational effectiveness Develop and deliver quality products & services Expand strategic partnerships

Key Projects Comprehensive Vital Statistics Standards Vital Statistics Improvement: Timeliness and Data Quality State and Territorial Exchange of Vital Events (STEVE) Cause of Death Physician eLearning Module Electronic Verification of Vital Events (EVVE)

What Vital Records Does Well Periodic revisions to keep data relevant 2003 Standard Certificate Complete mandatory reporting Not a sample or survey Consistent, comparable data Vital Statistics Cooperative Program Continuous and cost efficient Administrative data system

What Vital Records Can Do Better Improved timeliness Enhanced data quality Linkages with other data sets

Improving Vital Records

BLUE SKY: What Success Looks Like

Requirements for Success User responsiveness – better timeliness Modernization – electronic systems Accurate data – cleaner data at the source Skilled workforce Data integration

Barriers to Success Factors that slow the flow of data Capital: financial, human, political Actors: leadership, capacity, buy-in (external) Systems: optimization, variation, adoption Data: quantity, completeness, lack of policies and protocols

Strategies for Improved Timeliness Professional development to enhance actor performance Evaluate system performance Use champions for marketing to data providers Release preliminary data Share best practices

Next Steps: Data Quality Create birth clerk professional development program Identify model hospital feedback reports on birth data quality Develop approaches to promoting hospital awareness of importance and uses of birth data Identify/address prenatal care data quality sources of problems

Next Steps: Cultivate the Next Generation of Leaders Identify specialized core competencies needed by vital records data managers Conduct gap analysis Address training needs Expand training opportunities for mid-career professionals

Strengthening Partnerships

Work with Data Providers/Users Address user community needs for improved data quality, timeliness, and accessibility Champion vital records: vital records are often taken for granted Obtain commitments to invest in building infrastructure to meet user needs for “more, better, faster” vital statistics data Work collaboratively to improve vital records

Benefits of Partnership Between DRH and NAPHSIS Assist DRH in achieving its priorities Help Vital Records Offices improve data quality, timeliness, and accessibility

Current Joint Efforts Survey of jurisdictions re: linkage with hospital discharge data Develop and promote technical resource for induced termination of pregnancy (ITOP) reporting Maternal and infant mortality reviews PRAMS data sharing agreement Obtain state-level data (abortion, linked birth-infant death file, ART, etc.) Research (e.g. housing mobility)

Potential NAPHSIS Support for DRH Communicate with vital records jurisdictions Conduct surveys about vital records practices Coordinate with vital records offices to help meet DRH needs for vital records data Facilitate cooperation between DRH and vital records offices Promote DRH focus areas/programs

Conclusions Vital Records Are Essential to Assess Reproductive Health Outcomes Better Vital Records Are Needed to Measure Reproductive Health Outcomes More Effectively Effective Partnerships Are Key to Success in Achieving Public Health Goals

Questions?

Contact Us Patricia W. Potrzebowski, Ph.D. Executive Director 962 Wayne Avenue, Suite 701 Silver Spring, MD