STATE of EQUILIBRIUM: DATA USE and PRIVACY Jan A. Markowitz, PhD NAPHSIS NAPHSIS-VSCP JOINT MEETING Portland, Oregon June 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 DATAPRIVACY LAWS/REGS/POLICIES & PROC