STATE of EQUILIBRIUM:DATA USE and PRIVACYJan A. Markowitz, PhD

NAPHSIS

NAPHSIS-VSCP JOINT MEETINGPortland, OregonJune 8, 2004

USE OF VITAL RECORDS DATA

Essential at all levels: Local State Federal

DATA USERS

Federal agencies State agencies Local agencies Academic researchers Media Advocacy organizations General public

RESPONSIBILITIES

Maximize the utility of the data for public health practice

Protect confidentiality Comply with State laws and regulations

RESPONSIBILITIES

Maximize the utility of the data

Public Health Assessment Programmatic Planning Programmatic Evaluation Research

RESPONSIBILITIES

Confidentiality

Individual identification Minimize/eliminate the ability to identify individuals

from vital records data

Data Linkage Limit/prevent the ability to link vital records data to

other data sets that could facilitate the identification of individuals

RESPONSIBILITIES

Laws, Regs, Policies & Procedures

Agencies must comply with State laws and regs pertaining to the release and re-release of State data

Laws and regs vary across States requiring special attention when considering the release of data

CHALLENGE

To provide data to the users of vital records data at a level sufficient to answer the user’s question while protecting the confidentiality of the data and also complying with state laws and policies

LANDSCAPE CHANGED

HIPAA Internet

Electronic access to data Access to multitude of data sets

IRBs State laws/regulations/policies & procedures

regarding access & confidentiality

FUTURE DIRECTIONS

Bi-directional understanding

Consensus process to resolve inconsistencies

Creative

FUTURE DIRECTIONS: Bi-Directional

Understanding Jurisdictions: need to understand NCHS’s charge to

disseminate data

Jurisdictions: need to understand the parameters for the use of vital statistic data in the NCHS Research Data Center

NCHS: needs to understand the laws & regulations within each state

FUTURE DIRECTIONS Forum for Consensus Vehicle to resolve inconsistencies between

NCHS re-release policies and State laws & regulations

Who owns the data Whose rules/regs supercede whose Where and when does HIPAA affect data

release Data Use Agreements Methods to minimize risk of disclosure

FUTURE DIRECTIONS: Methods to Minimize the Risk of Disclosure Recode to aggregate data values Numerator/Denominator rules for data

aggregation/cell suppression Reduce geographic specificity Aggregate years of data Remove rare events

Maternal age >60 Rare cause of death

FUTURE DIRECTIONS: Methods to Minimize the Risk of Disclosure Provide only those variables necessary to

answer question Categorize variables

Group ages – 5 year intervals Group year of death – 5 year intervals

FUTURE DIRECTIONS Creative

To the extent possible, without compromising our responsibilities, we should consider creative ways to facilitate the use of data

SUMMARY

Collectively, we have obligations:

To use the data for the public’s good

To protect the privacy of the individual

EQUILIBRIUM

DATA PRIVACY

LAWS/REGS/POLICIES & PROC