Health data in the information age use, disclosure, and privacy

Detalles Bibliográficos
Autor principal: Institute of Medicine (U.S.).
Autor Corporativo: Institute of Medicine (U.S.). Committee on Regional Health Data Networks (-)
Otros Autores: Donaldson, Molla S. (-), Lohr, Kathleen N., 1941-
Formato: Libro electrónico
Idioma:Inglés
Publicado: Washington, D.C. : National Academy Press 1994.
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.