Regional health care databases are being established around the country with the goal of providing timely and useful information to policymakers, physicians, and patients. But their emergence is raising important and sometimes controversial questions about the collection, quality, and appropriate use of health care data.

Based on experience with databases now in operation and in development, Health Data in the Information Age provides a clear set of guidelines and principles for exploiting the potential benefits of aggregated health data--without jeopardizing confidentiality.

A panel of experts identifies characteristics of emerging health database organizations (HDOs). The committee explores how HDOs can maintain the quality of their data, what policies and practices they should adopt, how they can prepare for linkages with computer-based patient records, and how diverse groups from researchers to health care administrators might use aggregated data.

Health Data in the Information Age offers frank analysis and guidelines that will be invaluable to anyone interested in the operation of health care databases.

Contents

• COMMITTEE ON REGIONAL HEALTH DATA NETWORKS
• Preface
• Acknowledgments
• Summary
  • The Problem
  • Institute of Medicine Study
  • Uses and Users of Information in HDOs
  • Public Disclosure of Data on Health Care Providers and Practitioners
  • Strengthening Quality Assurance and Quality Improvement Programs Through Data Feedback
  • Confidentiality and Privacy of Personal Data
  • The Future
• 1. Introduction
  • Advancing the Prospects for Comprehensive Health Databases and Networks
  • Health Database Organizations
  • The Institute of Medicine Study
  • Study Activities
  • Organization of the Report
  • Comment
• 2. Health Databases and Health Database Organizations: Uses, Benefits, and Concerns
  • Definitions
  • The Benefits of Health Databases
  • Users of Information in HDOs
  • Uses of Databases
  • Ensuring the Quality of Data
  • Summary
• 3. Public Disclosure of Data on Health Care Providers and Practitioners
  • PREVIOUS STUDIES
  • IMPORTANT PRINCIPLES OF PUBLIC DISCLOSURE
  • IMPORTANT ELEMENTS OF PUBLIC DISCLOSURE
  • COMMITTEE FINDINGS AND CONCLUSIONS
  • RECOMMENDATIONS
  • STRENGTHENING QUALITY ASSURANCE AND QUALITY IMPROVEMENT PROGRAMS
  • SUMMARY
  • APPENDIX 3A FAIRNESS AND PUBLIC DISCLOSURE OF DATA
• 4. Confidentiality and Privacy of Personal Data
  • HISTORICAL PERSPECTIVES AND GENERAL OBSERVATIONS ON DISCLOSURE OF INFORMATION
  • SOURCES OF CONCERNS ABOUT PRIVACY AND THE CONFIDENTIALITY OF HEALTH RECORDS
  • DEFINITIONS
  • EXPANDED DEFINITIONS
  • HARM FROM DISCLOSURE AND REDISCLOSURE OF HEALTH RECORD INFORMATION
  • PRIVACY INTERESTS AND HDOs
  • RELEVANCE OF EXISTING LAWS TO HDOs
  • OPTIONS FOR PROTECTING PRIVACY AND CONFIDENTIALITY OF HEALTH-RELATED DATA IN HDOs
  • COMMITTEE RECOMMENDATIONS
  • COMMENT
  • SUMMARY
• References
• Appendixes
  • A Fact-Finding for the Committee on Regional Health Data Networks
  • B Committee on Regional Health DataNetworks Biographical Sketches
• Glossary
• Acronyms

Support for this project was provided by the John A. Hartford Foundation, the American Health Information Management Association, Electronic Data Systems Corporation, and Science Applications International Corporation.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for this report were chosen for their special competencies and with regard for appropriate balance.

This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine