# Presentation: 410020

## January 28, 2004Outline of Presentation

**Overview of vitals and then**
**Discussion of analytic data files**
- 		Births
- 		Fetal deaths
- 		Linked births and infant deaths
- 		Deaths

## National Vital Statistics SystemAn Overview

- 57 reporting areas
- Decentralized
- US historical development-self-governing States
- Nothing on registration in US Constitution
- Responsibility based in state law
- Responsibility with provider of services

## Federal Role Defined by the Public Health Service Act – Sec 306 (h) (1)

- Annual collection of data from the records of births, deaths, marriages, and divorces
- Satisfactory data in necessary detail and form
- Encourage States to collect detailed data on ethnic and racial populations
- Each State or registration area shall be paid by the Secretary the Federal share of its reasonable (?!) costs

## National Vital Statistics System

**Individual Record Data**:
- Births
- Deaths
- Fetal Deaths
- Linked Infant Birth and Death
**Counts:**
- Marriages
- Divorces

## Vital Statistics 

- Core of our health data system
- Base for public health, social science, economic planning and program development
- Monitor key indicators of health world-wide and at the local, state and national level
- Track progress to goals
- Identify disparities
- Alert to emerging problems

**Notes:**
Every now and then we need to even remind ourselves of the value of this data system.  And why all of our efforts to re-engineer are so worthwhile.  

-- It’s the core of our health data system – the oldest, the leader, a pioneer
-- Vital statistics provide the base for public health research, policies and programs but also in every phase of life, here and throughout the world
-- Vital statistics track progress, identify disparities, alert us to new or emergency programs.  

## NCHS Roles: Promoting Consistency and Uniformity  

- Model State Vital Statistics Act and Regulations
- Standard Certificates and Reports – standardized worksheets

- Training materials – handbooks, videos, instruction manuals
- Technical assistance – ICD 10
- Software – ACME, MICAR, etc...

## Data Release: Provisional Data

- Most timely data release of counts and rates
- Short “fact sheet” released monthly on the Internet in the NVSR series
- Includes counts only of births, deaths, infant deaths, marriages & divorces
- Estimates based on counts of certificates received during a one-month period, regardless of month of occurrence

## Data Release: Preliminary Data

- Detail for basic variables and preview of data in final report; data track well with final report
- Based on substantial sample of records – 99% of all births for 2003; 97% of demographic-deaths and 92% of medical-deaths for 2002
- Sample of all records received and processed by cut-off date – 3-4 months after end of data year 2003 for births, 7 months for deaths
- Births published 6-11 months after end of year; 14-15 months for deaths

## Data Release: Final Data

- Annual reports – based on all US births and deaths in a given year
- Final public use files available with release of final data reports
- Births released 12 months after end of data year , deaths about 21 months after end of data year
- Integration of data from 1989 and 2003  certificate revisions delayed 2003 release by 3-4 months

## Development of the Revised Birth and Death Certificates 12th Revision

- 12 revisions during the 20th century:  11th revision is still in use in many jurisdictions
- In 1998, NCHS assembled an expert panel to evaluate the current certificate and recommend changes.
- Panel consisted of State vital registration and statistics executives representing 11 jurisdictions **(NAPHSIS**) as well as
- Researchers and representatives of data providers and user organizations - (e.g., AAP, ACNM, ACOG, AHA, AHIMA, AMA, and ASTHO).

## Why revise? 

-     -**Research Implications-**
- Provide improved data for *each *of more than 4 million births, 2.4 million deaths, and about 25,000 fetal deaths annually. *For Example**:*
- Research on the etiology of premature birth will be substantially improved through the collection of data on important pregnancy risk factors.....

## Why Re-engineer Vital Registration Systems?

- Automation of records at the source
- Flexibility to revise rapidly, address new data needs
- Speed the flow of data
- Implemented by states along with new standard certificates
- Potential for linking with other health data systems
- Protocols and standards for **Intelligence Reform Act**

## Intelligence Reform Act

- Legislation just signed by the President  contains **authorization** for grant programs to strengthen state registration and certification for identity purposes
**If appropriations follow** ... we could have a rejuvenated vital statistics system for states and the nation through boot -strapping statistical needs with registration needs

## Recent analytic additions

**quality added to quality= the best**

## Quality Additions in the Last Year

- Sharon Kirmeyer, Ph.D. –  Brown University: Demographer: Strong skills in Reproductive Health and Demographic Data, and special interest  in perinatal issues, modeling maternal health and demographic dynamics, immigrant health.
- Jo Jones, Ph.D. – University of Washington: Sociologist: Strong skills in Survey Research Methods and Data Collection and special interest  in effects of social and economic factors on women’s and children’s health and well-being.
- Brittany  Dawson, M.P.P. (Master of Public Policy)- Georgetown: An HHS Emerging Leader with concentration in Family and Social Policy Issues.
- Melonie Heron, Ph.D. – Penn State: Demographer: Strong skills in data analysis and research methodology and special interest in health disparities, immigrant health and chronic disease outcomes.
- Michael Spittel, Ph.D. – University of Wisconsin: Demographer: Strong skills in data analysis and modeling and special interest in the relationship between inequality and mortality.

**Notes:**
Every now and then we need to even remind ourselves of the value of this data system.  And why all of our efforts to re-engineer are so worthwhile.  

-- It’s the core of our health data system – the oldest, the leader, a pioneer
-- Vital statistics provide the base for public health research, policies and programs but also in every phase of life, here and throughout the world
-- Vital statistics track progress, identify disparities, alert us to new or emergency programs.  

## Some Recent Journal Articles authored by DVS analysts:

- Rise in “no indicated risk” primary cesarean in the United States,
- 1991-2001: cross sectional analysis.  *British Medical Journal*. 2005.
- Racial differences in leading causes of infant death in the
- United States. *Pediatric and Perinatal Epidemiology. *2004*.*
- Delayed Interval Delivery and Infant Survival : A Population-Based Study. *American Journal of Obstetrics and Gynecology. * 2004.
- The Rise in Multiple Births in the U.S., Who, What, When, Where and Why. *Clinical Obstetrics and Gynecology. *2004.
- Trends in Multiple Births Conceived Using Assisted Reproductive Technology. *Pediatrics. 2003.*
- Annual Report to the Nation on the Status of Cancer, 1975–2001, with a Special Feature Regarding Survival. *Cancer*. 2004.

## Some Recent Journal Articles authored by DVS analysts:

- Paradox Lost: Explaining the Hispanic Adult Mortality Advantage.*  Demography. *2004.
- Mortality associated with birth defects: Influence of successive disease classification revisions. *Birth Defects Research*. 2003.
- Disease Classification: Measuring the Effect of the Tenth Revision of the International Classification of Diseases on Cause of Death Data in the United States. *Statistics in Medicine*. 2003.
- Long Term Trends in Cancer Mortality in the United States, 1930-1998.* Cancer. *2003.
- Increase in HIV Deaths Due to Changes in Rules for Selecting Underlying Cause of Death. *Journal of Acquired Immune Deficiency Syndromes*. 2003.
- Classification of deaths resulting from terrorism.  *Homicide Studies*. 2003.
- Influence of Rules from the Tenth Revision of the International Classification of Diseases on U.S. Cancer Mortality Trends.  *Journal of the National Cancer Institute*. 2003.

## -Birth file- with the 2003 revision there will be an almost completely new analytic file 

## Leading indicators from birth certificate data:

**Leading indicators from birth certificate data**:
- Birth Rates by Age
- Teenage Pregnancy and Childbearing
- Timing and Adequacy of Prenatal Care
- Cesarean Delivery and VBAC
- Preterm Birth and Low Birthweight
- Multiple Births

## Leading indicators from birth certificate data

**Leading indicators from birth certificate data**
- Fertility and Maternal/Infant Health Differences by
- Race/Hispanic Origin and Educational Attainment
- Geographic Differences (State, county-level data)
- Neural Tube Defects
- Maternal Medical Risk Factors (Diabetes, Hypertension)
- Smoking During Pregnancy

## The New Birth Certificate:Additional New and Improved Items

- Maternal Demographic and Social Factors
- Age and parity
- Marital status
- Educational attainment (captures highest degree)
- Race and Hispanic ethnicity (captures multiple race)
- Use of  WIC food during this pregnancy
- Principal source of payment for the delivery
- Breastfeeding

## The New Birth Certificate:Modified Items

- Cigarette smoking before and during pregnancy, captures levels of smoking
- Pre-pregnancy weight, weight at delivery and height, used to calculate Body Mass Index and weight gain

## Detailed Specifications for Electronic Systems

- 	Because states have automated systems in hospitals -detailed specifications for birth certificate were been developed.  The specifications include:

- Suggested electronic screens
- Response categories
- Drop-down menus
- Edits
- Help screens
- Ability to edit and query at data entry; resolution of data issues at the source

## Birth reporting is automated in hospitals  -however systems are inflexible and antiquated and can’t make these needed changes

**Notes:**
Every now and then we need to even remind ourselves of the value of this data system.  And why all of our efforts to re-engineer are so worthwhile.  

-- It’s the core of our health data system – the oldest, the leader, a pioneer
-- Vital statistics provide the base for public health research, policies and programs but also in every phase of life, here and throughout the world
-- Vital statistics track progress, identify disparities, alert us to new or emergency programs.  

## Research Implications for New Items

- 	More accurate and comprehensive reporting on the birth certificate will enhance our ability to analyze and track crucial indicators of maternal and child health.

-  Hypertension
-  PROM
-  Maternal infections
-  Low birthweight
-  Preterm birth
-  Fertility therapy
-  Maternal demographic factors
-  Participation in the WIC program
-  Prenatal care utilization
-  Induction of labor
-  Neural tube defects

## But it is not just Vitals:Two recent reports focusing on teens for birth and infant health and pregnancy rates using vital stats for births, CDC and AGI for abortions, and NSFG for fetal losses

## Major Users of Birth and Infant Health Data

*Federal Agencies and Other Governmental:*
- CDC’s Division of Reproductive Health, NCCDPHP
- CDC’s National Center for Birth Defects and
- Developmental Disabilities
- Surgeon General
- National Institute for Child Health and Human Development
- HHS Assistant Secretary for Planning and Evaluation
- HHS Administration for Children and Families
- HHS Office of Population Affairs
- U.S. Census Bureau
- Social Security Administration
- Indian Health Service
- Department of Homeland Security
- Canadian Institute for Health Information
- Maternal and Child Health Bureau, HRSA
- Georgia Campaign for Adolescent Pregnancy Prevention
- The Kentucky Cancer Registry
- United Nations

## Advocacy Groups, Think Tanks, Professional Groups

**Using Birth and Infant Health Data**
- March of Dimes
- The Urban Institute
- National Campaign to Prevent Teen Pregnancy
- Child Trends
- Annie E. Casey Foundation (*Kids Count * reports)
- Population Reference Bureau
- SIDS Alliance
- Child Health USA
- American College of Obstetricians and Gynecologists
- American College of Nurse-Midwives
- National Partnership to Help Pregnant Smokers Quit
- International Cesarean Section Awareness Network
- Planned Parenthood
- National Organization on Fetal Alcohol Syndrome
- Negative Population Growth
- Maternal and Child Health Policy Research Center
- Association of Maternal and Child Health Programs
- Marvelous Multiples

## Commercial Organizations

**Using Birth and Infant Health Data**
- Nestles
- Westat
- Hasbro
- Fisher-Price
- Pfizer
- Toys R Us
- Novartis
- Porter-Novelli
- Land’s End
- Honeywell

## Methodological Challenges: Births

- Testing the quality of new data
- “Integration” of different data items from states operating under different revisions
- Use of expanded race/ethnicity data and bridging back to old categories
- How best to utilize new data from selected states?
- Future:  How to provide and publish data on a current flow basis?

## Fetal Death File

## The U.S. Standard Report of Fetal Death: Modified Items

- 	The U.S. Standard Report of Fetal Death was also revised with changes similar to the birth certificate.
- 	Modified items include:
**Maternal morbidity**
**Smoking**
**Method of delivery**
**Congenital anomalies**
**Cause of death **

## Leading indicators – using fetal death data:

**Leading indicators – using fetal death data**:
- Pregnancy Health
- Pregnancy Rates
- Perinatal Mortality Rates
- Tracking Causes of Pregnancy Loss
- Differences in Pregnancy Outcomes by Race/Ethnicity
- Tracking outcomes for multiple deliveries

## Major Agency/Foundation Users of Fetal Mortality Data

- CDC’s Division of Reproductive Health, NCCDPHP
- National Institute for Child Health and Human Development
- HHS Assistant Secretary for Planning and Evaluation
- Maternal and Child Health Bureau, HRSA
- March of Dimes
- International Cesarean Section Awareness Network
- American College of Nurse-Midwives
- American College of Obstetricians and Gynecologists
- Association of Maternal and Child Health Programs
- National Organization on Fetal Alcohol Syndrome

## Methodological and Analytic Challenges  for Fetal Death Reporting

**reporting issues impact infant mortality reporting**
** ****not receiving early fetal loss**
**quality of cause of death**

## Linked  Birth and Infant Death File

## Leading Indicators

**Leading Indicators**
**Linked Birth/Infant Death Data:**
- Differences in Pregnancy Outcomes by:
- Race/Ethnicity
- Marital Status
- Educational Attainment
- Maternal Medical Risk Status
- Smoking Status During Pregnancy
- Gestation and Birthweight-Specific
- Infant Mortality Rates
- Infant Mortality Rates by Plurality
- Geographic Variation in Infant Mortality
- Leading Causes of Infant Death

## Why is the linked file important for examining changes in IMR?

**Is the change in IMR the result of changes in risk BEFORE birth?**
- Maternal characteristics
- Infant characteristics
- Characteristics of labor and delivery
**OR**

## Why use the linked file for IMR?

-   If not before - Is the change in IMR primarily the result of an increase in the risk of death AFTER birth**:**
- changes in birthweight/gestation-specific mortality?
- changes in obstetric and neonatal care?

## Example of improved analysis of infant mortality reporting through the use of the linked Birth and Infant Death File

## Results of DVS Analysts’ Research:

- An increase in the birth of very small infants is
- the major reason behind the increase in
- U.S. infant mortality in 2002.
- Infant mortality rates also increased for low
- birthweight, very low birthweight, and
- preterm infants.
- Increases in births at <750 grams found for
- all race/ethnicity groups.
- Most of increase occurred among mothers
- 20-34 years, the prime childbearing ages.
- Singleton births accounted for most of increase
- though multiple births accounted for 25% .

## Major Agency/Foundation Users of Linked Birth/Infant Death Data

- CDC’s Division of Reproductive Health, NCCDPHP
- National Institute for Child Health and Human Development
- HHS Assistant Secretary for Planning and Evaluation
- Maternal and Child Health Bureau, HRSA
- March of Dimes
- SIDS Alliance
- National SIDS and Infant Death Resource Center
- Association of Maternal and Child Health Programs
- International Cesarean Section Awareness Network
- American College of Nurse-Midwives
- American College of Obstetricians and Gynecologists
- Association of Maternal and Child Health Programs
- National Organization on Fetal Alcohol Syndrome

## Mortality File

**	**

## Data Items on the Mortality File

**Demographic and other characteristics**
**Age, race, Hispanic origin, sex, marital status, education **
**Geographic**
**State, MSA, county – of occurrence and residence, State of birth**

## Data Items on the Mortality File

**Medical **
**Underlying cause of death**
**Other diseases/injuries reported (max 20) **
**Manner of death, place of death, place of injury, injury at work **

## Death Registration Process: Two Responsible Parties and an Old Story

- Hospital (or ME/coroner) initiates **paper** certificate and gives to funeral director
- Funeral director obtains personal facts about decedent, completes certificate, and obtains cause of death from attending physician as needed
- FD files certificate with local office or State office, per State law; obtains burial permit
- Local office may hold records for fixed period (e.g. 2 months) to provide copies to family members
- State office receives certificate and codes/keys demographic and medical information
- State office transmits demographic and medical data electronically to NCHS for editing and possible additional coding of medical data.

## Collecting cause of death data

- Physician, medical examiner or coroner fills out the medical portion of the death certificate

- Literal text from Parts I and II are processed using a suite of software designed to convert the text to ICD-10 codes and select the underlying cause of death

## There is hope for Electronic Systems at the Source

**	**Eventually, deaths are expected to be registered electronically.  Therefore, detailed specifications for each data item on the electronic death certificate have been developed.  The specifications include:

- Suggested electronic screens
- Response categories
- Drop-down menus
- Edits
- Help screens
- Ability to edit and query at data entry; resolution of data issues at the source

##  New Death Certificate:Modified Items

- Decedent’s race, captures multiple race identification
- Decedent’s education, captures highest degree attained
- Decedent’s marital status distinguishes “Married” from “Married, but separated”
- Place of death includes hospice facility
**	**

##  New Death Certificate:Important New Items

- If female, pregnancy status at time of death that will help identify maternal and pregnancy-related deaths
- If transportation injury, decedent’s role with respect to vehicles
- Did tobacco use contribute to death?
- Separate instructions for funeral director and person completing medical portion

## Major Users of Death Data

*Federal Agencies:*
- Office of the Surgeon General
- HHS Assistant Secretary for Planning and Evaluation
- Government Accountability Office
- CDC’s Nat’l Center for Chronic Disease Prevention and Health Promotion
- CDC’s National Center for Injury Prevention and Control
- CDC’s National Center for Infectious Diseases
- CDC’s National Institute of Occupational Safety and Health
- CDC’s National Center for HIV, STD and TB Prevention
- U.S. Census Bureau
- Social Security Administration
- Food and Drug Administration
- Indian Health Service
- National Cancer Institute
- National Heart, Lung and Blood Institute
- National Institute on Aging
- National Institute on Drug Abuse
- National Highway Traffic Safety Administration
- Agency for Healthcare Research and Quality
- Substance Abuse and Mental Health Services Administration

## Other Users of Death Data

- United Nations
- World Health Organization
- Pan American Health Organization
- American Cancer Society
- American Heart Association
- American Lung Association
- American Diabetes Association
- American College of Surgeons
- National Association of Medical Examiners
- National Bureau of Economic Research
- Max Planck Institute for Demographic Research
- North American Association of Central Cancer Registries
- Population Reference Bureau
- Various State and Local Departments of Health
- Various Marketing, Investment, Insurance, Pharmaceutical, Healthcare and Law Firms
- Various Colleges and Universities

## Methodological and Systems Challenges

- Integrating 2 separate providers of data  – Funeral Director and Physician
- Collecting cause of death information and automated medical coding
- Quality of cause of death information
- Proxy reporting of demographic information – e.g., age, race, Hispanic origin

## Problems in the Reporting of Cause of Death

- Overall the consistency and quality of the coding is very good – but, of course, output is only as good as the input provided
- Problems with the input
- Ill-defined conditions and modes of dying
- Lack of specificity
- Improper completion of the form
- Misdiagnosis

## Ill-defined conditions and modes of dying

| Cause of death | Underlying cause |  | Any mention |  |
| --- | --- | --- | --- | --- |
|  | Deaths | Percent of total deaths | Deaths | Percent of total deaths |
| All ill-defined conditions     
    and modes of dying | 108,108 | 4.5 | 954,892 | 39.5 |
| Cardiac arrest (I46) | 17,331 | 0.7 | 354,958 | 14.7 |
| Heart failure (I50) | 56,934 | 2.4 | 293,651 | 12.2 |
| Respiratory arrest (R09.2) | 2,106 | 0.1 | 69,201 | 2.9 |
| Respiratory failure (J96) | 3,246 | 0.1 | 162,264 | 6.7 |
| Senility (R54) | 4,189 | 0.2 | 21,685 | 0.9 |
| Unknown or unspecified 
    causes (R99) | 17,707 | 0.7 | 35,293 | 1.5 |

- Source: National Vital Statistics System, 2001

## Improper completion of the form

- Improper sequences
- Underlying cause designated by certifier was consistent with that selected by ACME 71% of the time (62%, excluding cases where only 1 condition was mentioned)
- Multiple conditions on the same line in Part I
- 10% of records contain at least 1 line in Part I with more than 1 condition listed

## How can a re-engineered help us get better cause of death information?

- More accessible instructions – help screens
- Flexibility to add or modify data items to get additional information about causes of special interest
- Real-time querying
- Spelling and decipherability of terms
- Abbreviations
- Prompts to include more specific information
- Prompts to** **avoid certain terms or certification practices

## Public Health Implications

**Cause-of-death trends**
**Leading causes of death**
**Life expectancy**
**Socio-economic differentials**
**Demographic differentials**

- More accurate and comprehensive reporting on the death certificate will enhance our ability to analyze and track crucial indicators of health, particularly with regard to causes of death.

- Number of deaths

- Age-adjusted death  rate

## This is the beginning of a new era for vital registration and statisticsMeasuring “what is”not just “what was”