Health data in the information age use, disclosure, and privacy
Autor principal: | |
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Autor Corporativo: | |
Otros Autores: | , |
Formato: | Libro electrónico |
Idioma: | Inglés |
Publicado: |
Washington, D.C. :
National Academy Press
1994.
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Edición: | 1st ed |
Materias: | |
Ver en Biblioteca Universitat Ramon Llull: | https://discovery.url.edu/permalink/34CSUC_URL/1im36ta/alma991009820334906719 |
Tabla de Contenidos:
- 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
- Key Attributes of Databases
- Other Characteristics of Databases
- 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
- Minimizing Potential Harms
- 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
- SUMMARY
- 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
- DEFINITIONS
- Privacy
- Informational Privacy
- Recordkeeping Privacy
- Privacy Rights
- Balancing Benefits of HDOs Against Loss of Informational Privacy
- Federal and State Privacy Protection
- Confidentiality
- Confidentiality Obligations in Health Care
- Disclosure of Health Information
- Weaknesses of Legal Protection for Confidentiality
- Security
- 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
- A National Identification System or Dossier
- Personal Identifiers and the Social Security Number
- 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
- Preemptive Legislation
- Arguments for Federal Legislation
- Attaching Privacy Protection to Data
- Uniform Requirements
- Specific Elements of Federal Legislation
- Exemption from Compulsory Reporting and Compulsory Process
- Data Protection Units
- Establishing a Data Protection Board
- Developing Administrative Policies and Procedures
- Overseeing Data Integrity
- Release of Person-identified Data
- Policies Relating to Access and Disclosure
- Consent
- Release of Person-identified Data
- 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
- COMMENT
- The New Privacy
- SUMMARY
- 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.