Eve Powell-Griner

National Center for Health Statistics

Centers for Disease Control and PreventionNational Center for Health Statistics

Microdata Release PolicyNational Health

Interview Survey (NHIS)

Microdata

•A data file in which each record provides information at the unit level of data collection, including Individual persons

Households

Family

Events

NHIS Policy• Consistent with policies of the Centers for

Disease Control and Prevention (CDC) and the National Center for Health Statistics (NCHS)

• Guiding principle of making high quality data available As widely as practicable

As soon as possible after data collection

In as much detail as possible

While honoring statements in informed consent documents of survey participants

And adhering to statutory confidentiality restrictions (42 U.S.C. 242m(d).

Public Use Microdata Files

•Contain no personal identifier or confidential information

•Available to everyone

•Current file released in December of year following data collection

•Releases available on NCHS Internet

NHIS Non-Public Microdata

•Contain information which may pose risk of identification of respondent(s)

Detailed information on race, geographic area, occupation, etc.

Unusual characteristics of respondent

•Access strictly limited

Access to Nonpublic Microdata

•Special use agreement required

•Access dependent uponCompliance with statutory restrictions 42 U.S.C. 242m(d)

Respondent informed consent permits proposed use

Demonstrated need for access Ability to provide adequate safeguards

Four Mechanisms for Access to Nonpublic Use Microdata

files•NHIS/Collaborator Quality

Assurance Agreements

•NHIS Data Support Agreements

•NHIS Special Use Data Agreements

•NCHS Research Data Center Agreements

NHIS/Collaborator Quality Assurance Agreements

• Initiated by NHIS

• Only between NHIS and collaborators with a signed inter-agency funding agreement

• Only for purposes of assessing data quality

• Access to partial file, not full microdata file

NHIS Data Support Agreements

•Require signed agreement to assist in data collection or processing

•Initiated by the NHIS program

•Restricted to funding partners

NHIS Collaborator

• Formal working relationship

• Relationship begins at start of survey (planning and design stage)

• Requires formal, legal agreements

• Usually another federal agency

• Informed consent documents must permit collaboration

• NOT A MEANS OF EARLY ACCESS TO FILES

NHIS Special Use Data Agreements

• Occurs under special circumstances

• Limited non-public data access

• Requires Memorandum of Understanding, Inter-Agency Agreement or other instrument

• Usually federal/state agency, other organization

• Access not to exceed one calendar year

• NOT A MEANS OF EARLY ACCESS TO DATA

Research Data Center

•Provides a mechanism for researchers to access:

Data not released to the public because of nondisclosure or confidentiality reasons• Small area or micro data• Merges to other data files

•Each request is considered on a case-by-case basis

NCHS Research Data Center (RDC)

•Access occurs within NCHS, often by NCHS or approved staff

•Non-NCHS researcher submits research proposal to RDC

•All approved research must have funding to pay for costs of research

Important Internet Web Sites for Policy Information

•The CDC/ATSDR policy on releasing and sharing data may be accessed at www.cdc.gov/od/foia/policies/sharing.htm

• the NCHS data release policy may be accessed at www.cdc.gov/nchs/about/policy/reldata.htm

NCHS Data Research Center

•Information on submission of a research proposal to the RDC available at http://www.cdc.gov/nchs/r&d/rdc.htm