Excerpt

Patients Charting the Course: Citizen Engagement and the Learning Health System summarizes the 2-day workshop convened in April 2010 to identify and reflect upon current strategies and programs advancing public understanding of a transformative, patient-centered learning health system. Stakeholders and leaders within the health sector identified patients and providers as the groups who must be fully engaged to reform the current health system infrastructure, and discussed ways to involve these key constituents. The meeting provided a forum for participants to further discuss issues in communication strategies around science-driven care, patient engagement, and health information technology. This volume of presentations and discussions provides insights and reflections from government leaders, patient advocacy groups, health providers, manufacturers, and other key stakeholders about the issues that must be addressed to reform the way evidence is generated and used to improve health and health care. Participants discussed issues such as the structural details of a system of real-time and continuous learning that anticipates research needs and produces evidence that is timely and applicable; the importance of clinical data, health management, and health information technology as drivers during the information age; patient engagement to improve science and value; and the formation of a patient-centered culture focused on applying evidence and embracing team-based healthcare approaches.

Contents

• THE NATIONAL ACADEMIES
• ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE
• Reviewers
• Institute of Medicine Roundtable on Value & Science-Driven Health Care
• Foreword
• Preface
• Abbreviations and Acronyms
• Synopsis and Overview
  • INTRODUCTION AND OVERVIEW
  • THE ROUNDTABLE AND THE LEARNING HEALTH SYSTEM SERIES
  • COMMON THEMES
  • PRESENTATION SUMMARIES
  • NEXT STEPS
  • REFERENCES
• 1. The Learning Health System
  • INTRODUCTION AND CONTEXT
  • THE ROUNDTABLE AND THE LEARNING HEALTH SYSTEM SERIES
  • HEALTHCARE REFORM AND A LEARNING HEALTH SYSTEM
  • CREATING A LEARNING CULTURE
  • THE LEARNING HEALTH SYSTEM IN 2010 AND TO COME
  • REFERENCES
• 2. Clinical Research, Patient Care, and Learning That Is Real-Time and Continuous
  • INTRODUCTION
  • COMPARATIVE EFFECTIVENESS RESEARCH: PATIENT, CLINICIAN, AND POLICY NEEDS
  • HEALTH SYSTEMS AS RESEARCH PLATFORMS: ENHANCING SCIENCE, VALUE, AND INNOVATION
  • ENHANCING THE CULTURE OF PATIENT CONTRIBUTIONS TO LEARNING IN HEALTH CARE
  • REFERENCES
• 3. Clinical Data as a Public Good for Discovery
  • INTRODUCTION
  • INFORMATION NEEDS FOR A LEARNING HEALTH SYSTEM
  • OPENING ACCESS TO HIGH-VALUE DATA SETS
  • ENSURING DATA INTEGRITY: ADDRESSING PRIVACY PROTECTION AND PROPRIETARY CONCERNS
  • REFERENCES
• 4. Engaging Patients to Improve Science and Value in a Learning Health System
  • INTRODUCTION
  • INVESTING PATIENTS IN THE RESEARCH AND CONTINUOUS IMPROVEMENT ENTERPRISE
  • PUBLIC AND PATIENT STRATEGIES TO IMPROVE HEALTH SYSTEM PERFORMANCE
  • COMMUNICATING WITH PATIENTS ABOUT THEIR CONCERNS, EXPECTATIONS, AND PREFERENCES
  • REFERENCES
• 5. Health Information Technology as the Engine for Learning
  • INTRODUCTION
  • THE MEANINGFUL USE OF HEALTH INFORMATION TECHNOLOGY
  • NEW CLASSES OF DATA, NEW OPPORTUNITIES TO LEARN
  • WEB 2.0 AND PATIENT ENGAGEMENT
  • REFERENCES
• 6. Patients, Clinical Decisions, and Health Information Management in the Information Age
  • INTRODUCTION
  • PUBLIC AND PATIENT INFORMATION ACCESS AND USE AS A CORE CARE COMPONENT
  • HEALTH INFORMATION TECHNOLOGY–BASED APPROACHES TO HEALTH MANAGEMENT
  • HEALTH AND DISEASE MANAGEMENT OUTSIDE THE CLINIC DOORS: THERE’S AN APP FOR THAT!
  • REFERENCES
• 7. Applying Evidence for Patient-Centered Care: Standards and Expectations
  • INTRODUCTION
  • THE ROLE OF EVIDENCE IN PATIENT-CENTERED CARE
  • EVIDENCE STANDARDS AND APPLICATION: RIGHT CARE, RIGHT PATIENT, RIGHT TIME
  • TRANSLATION AND COMMUNICATION NEEDS FOR CARE IN THE FACE OF UNCERTAIN EVIDENCE
  • REFERENCES
• 8. Team-Based Care and the Learning Culture
  • INTRODUCTION
  • PRACTICAL EXPERIENCE WITH COLLABORATIVE MODELS IN THE HEALTH PROFESSIONS
  • MEASURES AND STRATEGIES FOR CLINICAL EXCELLENCE AND CONTINUOUS IMPROVEMENT
  • CARE COOPERATION AND CONTINUITY ACROSS CLINICIANS, FACILITIES, AND SYSTEMS
  • REFERENCES
• 9. Incentives Aligned with Value and Learning
  • INTRODUCTION
  • PAYING FOR VALUE AND SCIENCE-DRIVEN CARE
  • GENERATING EVIDENCE TO GUIDE CARE
  • CREATING A LEARNING CULTURE
  • REFERENCES
• 10. Common Themes and Opportunities for Action
  • INTRODUCTION
  • COMMON THEMES
  • STRATEGIES FOR MOVING FORWARD
  • LOOKING AHEAD TO NEXT STEPS
  • REFERENCE
• Appendixes
  • Appendix A Workshop Agenda
  • Appendix B Biographical Sketches of Workshop Participants
  • Appendix C Workshop Attendee List
  • Appendix D The Learning Health System Series: Workshop Common Themes

This project was supported by the Agency for Healthcare Research and Quality, AstraZeneca, Blue Shield of California Foundation, California Health Care Foundation, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Kaiser Permanente, National Institutes of Health, Office of the National Coordinator for Health IT, The Peter G. Peterson Foundation, sanofi-aventis, Stryker, and the UnitedHealth Foundation.

Suggested citation:

IOM (Institute of Medicine). 2011. Patients charting the course: Citizen engagement and the learning health system: 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.