Excerpt

The Clinical Data as a Basic Staple of Health Learning: Creating and Protecting a Public Good publication is a summary of the proceedings of the sixth workshop in the Learning Health System series. Held on February 12–13, 2008, this workshop was designed to explore leading perspectives on clinical data as a transformative agent in health care, as well as possible strategies for their implementation in the delivery of evidence-based care. Issues motivating the discussion include:

1. Discovering what works best in medical care—including for whom and under what circumstances—requires that clinical data be carefully nurtured as a resource for continuous learning.
2. Transformational opportunities are presented by evolving large and potentially interoperable clinical and administrative datasets.
3. Clinical data are recorded and held in multiple activities and many institutions, including medical records, administrative and claims records, and research studies.
4. Public policy and public awareness lag behind the technical, organizational, and legal capacity for reliable safeguarding of individual privacy and data security in mining clinical data for new knowledge.
5. A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved.
6. Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights.
7. Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.

Contents

• The National Academies
• Roundtable on Value & Science-Driven Health Care
• Reviewers
• Institute of Medicine Roundtable on Value & Science-Driven Health Care
• Foreword
• Preface
• Summary
  • INTRODUCTION AND OVERVIEW
  • COMMON THEMES
  • PRESENTATION AND DISCUSSION SUMMARIES
  • CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING: IDEAS FOR ACTION
  • REFERENCES
• 1. Clinical Data as the Basic Staple of the Learning Health System
  • INTRODUCTION
  • CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING
  • VISION FOR THE FUTURE: CREATING A PUBLIC GOOD FOR THE PUBLIC’S HEALTH
  • REFERENCES
• 2. U.S. Healthcare Data Today: Current State of Play
  • INTRODUCTION
  • CURRENT HEALTHCARE DATA PROFILE
  • DATA USED AS INDICATORS FOR ASSESSING, MANAGING, AND IMPROVING HEALTH CARE
  • DATA PRIMARILY COLLECTED FOR NEW INSIGHTS
  • HEALTH PRODUCT MARKETING DATA
  • REFERENCES
• 3. Changing the Terms: Data System Transformation in Progress
  • INTRODUCTION
  • EMERGING LARGE-SCALE LINKED DATA SYSTEMS AND TOOLS
  • NETWORKED DATA-SHARING AND STANDARDIZED REPORTING INITIATIVES
  • LARGE HEALTH DATABASE AGGREGATION
  • REGISTRIES AND CARE WITH EVIDENCE DEVELOPMENT
  • REFERENCES
• 4. Healthcare Data: Public Good or Private Property?
  • INTRODUCTION
  • CHARACTERISTICS OF A PUBLIC GOOD AND HOW THEY ARE APPLIED TO HEALTHCARE DATA
  • CHARACTERISTICS OF THE MARKETPLACE FOR MEDICAL CARE DATA
  • LEGAL ISSUES RELATED TO DATA ACCESS, POOLING, AND USE
  • REFERENCES
• 5. Healthcare Data as a Public Good: Privacy and Security
  • INTRODUCTION
  • PUBLIC VIEWS
  • HIPAA IMPLICATIONS AND ISSUES
  • EXAMPLES FROM OTHER SECTORS
  • INSTITUTIONAL AND TECHNICAL APPROACHES TO ENSURING PRIVACY AND SECURITY OF CLINICAL DATA
  • REFERENCES
• 6. Creating a Next-Generation Data Utility: Building Blocks and the Action Agenda
  • INTRODUCTION
  • BUILDING ON COLLABORATIVE MODELS
  • TECHNICAL AND OPERATIONAL CHALLENGES
  • ECONOMIC INCENTIVES AND LEGAL ISSUES
  • THE ACTION AGENDA
  • AREAS FOR FOLLOW-UP
• 7. Engaging the Public
  • INTRODUCTION
  • GENERATING PUBLIC INTEREST IN A PUBLIC GOOD
  • IMPLICATIONS OF “PATIENTS LIKE ME” DATABASES
  • IMPLICATIONS OF PERSONAL HEALTH RECORDS
  • REFERENCE
• 8. Clinical Data as the Basic Staple of Health Learning: Ideas for Action
  • INTRODUCTION
  • COMMON THEMES
  • ISSUES AND OPPORTUNITIES
  • AREAS FOR INNOVATION AND COLLABORATIVE ACTION
• Appendixes
  • Appendix A Workshop Agenda
  • Appendix B Biographical Sketches of Workshop Participants
  • Appendix C Workshop Attendee List
  • Appendix D The IOM Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule
• Other Publications in the Learning Healthcare System Series

Rapporteurs: Alex W Goodby, LeighAnne Olsen, and Michael McGinnis

This project was supported by the Agency for Healthcare Research and Quality, America’s Health Insurance Plans, AstraZeneca, Blue Shield of California Foundation, Burroughs Wellcome Fund, California Health Care Foundation, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Moore Foundation, National Institutes of Health, The Peter G. Peterson Foundation, sanofi-aventis, and Stryker.

Suggested citation:

IOM (Institute of Medicine). 2010. Clinical data as the basic staple of health learning: Creating and protecting a public good: Workshop Summary. Washington, DC: The National Academies Press.

Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

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.