# Presentation: 431494

##  Modification to the NCHS Data Release Policy 

**-A Response to the States-**
** **

**Centers for Disease Control and Prevention**
**National Center for Health Statistics**

- NCHS Board of Scientific Counselors, September 16, 2005

## Current Data Release Policy

**Public Use File includes individual record data with all variables, with these restrictions:**
**Geography limited to counties and cities of 100,000+ population**
**No exact dates provided; instead:**
**Computed age of parents/decedent**
**Month and year of event**
**No restrictions on access to Public Use File; available to anyone**

## Current Data Release Policy, cont.

**Special requests for unit record data for smaller geographic units and/or exact dates are reviewed on individual basis:**
**For Federal agencies, signed data user agreement required**
**For non-Federal requests, researchers are referred to NCHS’ Research Data Center**

## Other access to vital statistics data –NOT unit record data	

**Aggregated data by county, e.g., the Compressed Mortality File (CMS)**
**Aggregated birth and death data in CDC’ WONDER, other data access systems**

## No known breach of confidentiality to date under NCHS’ current data release policy 

## So why is current policy under review?

**Jurisdictions asked NCHS to review the current policy because of concerns that the NCHS policy is at variance with either **
**State laws and/or**
**State regulations and/or**
**State practices**

## Revised policy provides 4 types of electronic (CD) data releases:

**Individual-level NATIONAL public-use data file with no geographic detail (no State, county, or city identifiers) or exact dates;**
**Aggregated public-use data file, such as Compressed Mortality File on CDC’s WONDER internet system;**
**Customized individual-level file for Federal agencies with approved research proposals;**
**Customized individual-level file for non-Federal researchers with approved research proposals.**

## Individual-level public-use data file

**National file only—no State, county, or city identifiers;**
**Individual-level data;**
**Include all items and detail in the current PUF except for geography;**
**Available for births, deaths, fetal deaths, linked birth/infant death**

## Aggregated Public Use Death File

**CDC’s interactive web-system WONDER extracts data from NCHS’s Compressed Mortality File (CMF), including death files since 1979;**
**WONDER provides aggregate counts/rates for all counties, but suppresses cells <=5 for single-year data and county population < 100,000; **
**WONDER Variables: age in categories, race (white, black, other), sex, underlying cause of death (all causes according to ICD in effect for a given year);**
**Propose release of aggregated (CMF) file on CD-ROM for counties >= 100,000;**
**Other future options:  change 10-year age intervals to 5 year intervals; add race and Hispanic detail.**

## Aggregated Public-Use Birth File

**Available now on CDC’s interactive internet system WONDER, using individual-level natality files;**
**WONDER provides aggregate data for counties >= 100,000 population;**
**Categorized variables: mother’s age and education; birthweight, gestation, month prenatal care began; Other variables: mother’s race and Hispanic origin, sex of child, and plurality;**
**Propose release of aggregated birth file on CD-ROM for counties >= 100,000;**
**Future options: Add all counties in WONDER with small cell suppression.  Add mother’s marital status, number of prenatal visits, adequacy of prenatal care index, live birth order (to 6+), and cesarean delivery. **

## Aggregated Public-Use Linked Birth/Infant Death File

**Available now on CDC’s interactive internet system WONDER, using period files for 1995-1998;**
**WONDER provides aggregate data for counties >= 250,000 population;**
**Categorized variables: mother’s age and education; birthweight, gestation, month prenatal care began, child’s age at death;  Other variables: mother’s race and Hispanic origin, marital status; live birth order (to 6+);**
**Propose release of aggregated linked birth/infant death file on CD-ROM for counties >= 250,000;**
**Future option: Add all counties in WONDER with suppression of small cells.  Add number of prenatal visits, adequacy of prenatal care index, and cesarean delivery. **

## Custom individual-level files for Federal agencies

**Agency provides proposal and signed Data User Agreement;**
**Proposal review by NCHS committee, including NAPHSIS representative with veto power;**
**Customized individual-level file for specific project—may include exact dates and/or all State, county, and city codes, as needed and approved;**
**Return files to NCHS within one year unless renewal is requested and approved.**

## Custom individual-level files for non-federal researchers

**Researcher provides proposal and signed Data User Agreement;**
**Proposal review by NCHS committee, including NAPHSIS representative with veto power;**
**Customized individual-level file for specific project—may include all State, county, and city codes, as needed and approved, but **_**not**_** exact dates;**
**Return files to NCHS within one year unless renewal is requested and approved.**

## NCHS Research Data Center

**Researchers whose requests for individual-level files are not approved, or who request exact dates, may use facilities of NCHS’s Research Data Center (RDC);**
**RDC allows access for a fee to detailed data in a secure environment with stand-alone computer at NCHS that controls confidentiality; output is inspected and no confidential data leave NCHS premises.**

## NCHS Research Data Center

**Limitations**
**Not flexible for exploratory “what if” analysis and testing of multiple hypotheses **
**No opportunity for data linkage including related data sets or contextual data analysis**

## Where are we in negotiations for a 

**modified NCHS Data Release Policy?**

## NAPHSIS’ Response to Proposed Modification of NCHS Data Release Policy for Vital Statistics

**Some jurisdictions have requested further limitations:**
**Authority to restrict certain variables, at the state level, from the *****National*****  Public Use File as well as from the compressed/aggregated files**
**Exclude day of week**
**These restrictions compromise utility and value of the *****National *****Public Use File and the compressed files****	**

## New but Related Topic: Data Release Issues for NEW Items on Birth and Death Certificates

**NCHS is collecting data on NEW items from the revised birth and death certificates from states/jurisdictions which have implemented the revisions**

## NEW and IMPROVED DATA ELEMENTS 			for Births

**Maternal Risk Factors**
- Hypertension
- Prepregnancy
- Gestational
- Eclampsia
- Fertility therapy
- Drugs, artificial insemination,
- 	intrauterine insemination
- Assisted reproductive technology

**  **Infections during pregnancy
- 	STDs (gonorrhea, 	syphilis, chlamydia)
- 	Hepatitis B; hepatitis C
-  Previous preterm birth

## NEW and IMPROVED DATA ELEMENTS for Births, cont.

- Use of  WIC food during this pregnancy
- Principal source of payment for the delivery
- Cigarette smoking before and during pregnancy, captures levels of smoking
- Pre-pregnancy weight, weight at delivery and height = Body Mass Index and weight gain
- Method of delivery includes fetal presentation and trial of labor prior to cesarean delivery
- Congenital anomalies

## NEW DATA ELEMENTS for Deaths

- Decedent’s marital status distinguishes “Married” from “Married, but separated”
- Place of death includes hospice facility
- 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

## NAPHSIS’ Position on NEW Data Items

**NAPHSIS’ resolution authorizes jurisdictions to share *****NEW *****data items with NCHS, **_***but***_*** *****the new data items cannot be included in any Public Use File or in NCHS reports**
**NAPHSIS wants NCHS to pay for the additional data items and/or to increase $$ support for the entire data set**

## “Still talking”

**between NCHS and NAPHSIS over**
**NCHS’ Data Release Policy:**
**“****Still talking”**