Health data in the information age : use, disclosure, and privacy / Molla S. Donaldson and Kathleen N. Lohr, editors ; Committee on Regional Health Data Networks, Division of Health Care Services, Institute of Medicine.

Format:

Book

Author/Creator:

Institute of Medicine (U.S.). Committee on Regional Health Data Networks.

Contributor:

Donaldson, Molla S.

Lohr, Kathleen N., 1941-

Language:

English

Subjects (All):

Medical records--Access control.

Medical records.

Confidential communications--Physicians.

Confidential communications.

Medical informatics.

Physical Description:

1 online resource (271 p.)

Edition:

1st ed.

Place of Publication:

Washington, D.C. : National Academy Press, 1994.

Language Note:

English

Summary:

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:

Health Data in the Information Age

Copyright

Preface

Acknowledgments

Contents

Summary

THE PROBLEM

INSTITUTE OF MEDICINE STUDY

USES AND USERS OF INFORMATION IN HDOS

Databases

Key Attributes of Databases

Other Characteristics of Databases

Ensuring the Quality of Data

PUBLIC DISCLOSURE OF DATA ON HEALTH CARE PROVIDERS AND PRACTITIONERS

Key Factors in Public Disclosure

Analyses and Disclosure of Results

Describing Analytic Methods

Minimizing Potential Harms

Releasing Data

STRENGTHENING QUALITY ASSURANCE AND QUALITY IMPROVEMENT PROGRAMS THROUGH DATA FEEDBACK

CONFIDENTIALITY AND PRIVACY OF PERSONAL DATA

Privacy and Privacy Rights

Privacy Rights

Confidentiality

Security

A National Identification System or Dossier

Personal Identifiers and the Social Security Number

An "Ideal" Identifier

Relevance to HDOs of Existing Laws on Confidentiality and Privacy

Recommendations Regarding Protection of Patient and Person-identifiable Data

Preemptive Legislation

Data Protection Units

Release of Person-Identified Data

Policies Relating to Access and Disclosure

Universal Person-Identifiers

THE FUTURE

1 Introduction

ADVANCING THE PROSPECTS FOR COMPREHENSIVE HEALTH DATABASES AND NETWORKS

The Problem

The Opportunity

HEALTH DATABASE ORGANIZATIONS

THE INSTITUTE OF MEDICINE STUDY

The Study Committee and Its Charge

Questions Confronting the Study Committee

STUDY ACTIVITIES

ORGANIZATION OF THE REPORT

COMMENT

2 Health Databases and Health Database Organizations: Uses, Benefits, and Concerns

DEFINITIONS

Database

Data Network

Health Database Organization

The Concept of HDOs

HDOs Under Development

THE BENEFITS OF HEALTH DATABASES

Broad-based Benefits.

Differential Benefits as a Function of Users and Uses

USERS OF INFORMATION IN HDOS

USES OF DATABASES

Assessing Access to Care and Use of Services

Assessing Costs and Identifying Opportunities for Savings

Evaluating Quality and Outcomes of Care

Hospital-specific Mortality Rate Studies

Effectiveness and Outcomes Research

Quality Assurance and Quality Improvement Programs

Planning and Monitoring Patient Care

Enhancing Administrative Efficiency

Operating Managed Care Programs

Strategic Planning and Selective Contracting

Strategic Planning

Selective Contracting

Other Business-related Uses

Tracking Injury and Illness, Preventive Care, and Health Behaviors

Promoting Regional and Community Health Planning, Education, and Outreach

Health Planning and Education

Community Outreach

Other Uses for HDO Databases

Comment

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

Topics for HDO Analysis and Disclosure

Who Is Identified

Vulnerability to Harm

Methodological and Technical Issues

How Information Is Publicly Disclosed

COMMITTEE FINDINGS AND CONCLUSIONS

RECOMMENDATIONS

Advocacy of Analyses and Public Disclosure of Results

Advocacy of Data Release

Promoting Wide Applications of Health-related Data

Requiring Recipients to Protect Data Privacy and Confidentiality

Using Valid Analytic Techniques

Related Issues

Privacy Protections for Person-identifiable Data

Constrained Staff Capabilities

Obligations to Correct Analyses or Retract Information

STRENGTHENING QUALITY ASSURANCE AND QUALITY IMPROVEMENT PROGRAMS

Data Feedback.

Quality Assurance and Quality Improvement

Privileging

Peer Review Information

Public Disclosure and Feedback

APPENDIX 3A

Actual Numbers, Computed Values, and Risk Adjustment

Certainty, Probability, and Correct Inferences

The Educational Content of Public Information Dissemination

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

Health Care Records

Electronic Records

Privacy

Informational Privacy

Recordkeeping Privacy

Balancing Benefits of HDOs Against Loss of Informational Privacy

Federal and State Privacy Protection

Confidentiality Obligations in Health Care

Disclosure of Health Information

Weaknesses of Legal Protection for Confidentiality

Health-Related Information

EXPANDED DEFINITIONS

HARM FROM DISCLOSURE AND REDISCLOSURE OF HEALTH RECORD INFORMATION

Common" Disclosures

Inadvertent Release

''Routine" Releases or Uses in Accordance with Prevailing Practices

Rerelease to Third Parties Without the Subject's Knowledge or Consent (Secondary Use)

Covert Acquisition and Use of Data for Illegal or Unethical Purposes

Release of Inaccurate Data

PRIVACY INTERESTS AND HDOS

Foreseen and Unforeseen Circumstances

An Ideal Personal Identifier

Issues Relating to the SSN

SSN Uses for Other Than Medical Payments

Shortfalls of the SSN as an Identifier

Confidentiality of Research Uses of HDO Databases

RELEVANCE OF EXISTING LAWS TO HDOS

Laws Governing Insurance Support Organizations

Laws Governing Consumer Reporting Agencies.

HDOs as Governmental Entities: General Confidentiality Protections in Public Law

Constitutional Law

Legislative Charter

Freedom of Information Acts

Fair Information Practices

OPTIONS FOR PROTECTING PRIVACY AND CONFIDENTIALITY OF HEALTH-RELATED DATA IN HDOS

Uniform Legislation

Federal Preemptive Legislation

Uniform State Legislation

Options for Consent and Participation Rights

HDO Access to Data

Other Consent and Participation Rights

Disclosure Options

Disclosure-Oriented Options (Weak Options)

Confidentiality-Oriented Options (Strong Options)

Governance Options as an Approach to Privacy Protections

State-Based Systems

Private-Sector Systems

Mixed Governance Systems

Other Administrative Options to Protect Privacy and Confidentiality

COMMITTEE RECOMMENDATIONS

Overview and General Principles

Arguments for Federal Legislation

Attaching Privacy Protection to Data

Uniform Requirements

Specific Elements of Federal Legislation

Exemption from Compulsory Reporting and Compulsory Process

Establishing a Data Protection Board

Developing Administrative Policies and Procedures

Overseeing Data Integrity

Release of Person-identified Data

Consent

The Standing of Other HDOs

The Standing of Persons, Parents, and Legal Representatives

The Special Standing of Research

Special Patient Care Considerations

Prohibition on Access to Person-identifiable Data

Implications of Recommendations Denying Access

Employer Access

Universal Person Identifiers

The New Privacy

References

Appendixes

A Fact-Finding for the Committee on Regional Health Data Networks

PARTICIPANTS AND GUESTS AT COMMITTEE MEETINGS.

Expert Presentations and Briefings

Invited Guests and Observers

Institute of Medicine Staff

SITE VISITS

Memphis, Tennessee: July 26-28, 1992

Cleveland, Ohio: August 2-4, 1992

Des Moines, Iowa: August 26-28, 1992

Seattle, Washington: September 9-11, 1992

Rochester and Albany, New York: September 21-23, 1992

Albany

Rochester

Basic Findings of Site Visits

B Committee on Regional Health DataNetworks Biographical Sketches

Glossary

Acronyms

Index.

Notes:

Bibliographic Level Mode of Issuance: Monograph

Includes bibliographical references p. (214-224) and index.

ISBN:

9786610211364

9781280211362

1280211369

9780309538213

0309538211

9780585002347

0585002347

OCLC:

42328521