Health care has been called one of the most complex sectors of the U.S. economy. Driven largely by robust innovation in treatments and interventions, this complexity has created an increased need for evidence about what works best for whom in order to inform decisions that lead to safe, efficient, effective, and affordable care. As health care becomes more digital, clinical datasets are becoming larger and more numerous. By realizing the potential of knowledge generation that is more closely integrated with the practice of care, it should be possible not only to produce more usable evidence to inform decisions, but also to increase the efficiency and decrease the costs of doing clinical research.

Patient-Centered Clinical Research Network, or PCORnet, is a nation-wide patient-centered clinical research network intended to form a resource of clinical, administrative, and patient data that can be used to carry out observational and interventional research studies and enhance the use of clinical data to advance the learning health care system. The primary goal of the first phase of PCORnet will be to establish the data infrastructure necessary to do such research.

In April and June 2014 the Institute of Medicine's Roundtable on Value and Science-Driven Health Care convened two workshops aimed at accelerating progress toward real-time knowledge generation through the seamless integration of clinical practice and research, one of the fundamental concepts of a continuously learning health system, centered on the development of the PCORnet. The first workshop brought together health care system leaders, both administrative and clinical, and researchers to consider issues and strategic priorities for building a successful and durable clinical research network and facilitate progress toward a continuously learning health care system more broadly, including issues related to science, technology, ethics, business, regulatory oversight, sustainability, and governance. The second workshop focused on implementation approaches. Health system CEOs convened to consider strategic priorities and explore approaches to implementation. These workshops will inform the decisions of field leaders moving forward, including PCORI, the PCORnet steering committee, and PCORnet grantees. Integrating Research and Practice is the summary of the presentations and discussions of the workshops.

Contents

• THE NATIONAL ACADEMIES
• PLANNING COMMITTEE ON INTEGRATING RESEARCH AND PRACTICE: HEALTH SYSTEM LEADERS WORKING TOWARD HIGH-VALUE CARE
• ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE
• Reviewers
• Acronyms and Abbreviations
• 1. Introduction and Overview
  • SCOPE AND OBJECTIVES OF THE WORKSHOPS
  • THE ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE
  • ORGANIZATION OF THE SUMMARY
• 2. Continuous Learning and Improvement in Health Care
  • THE LEARNING HEALTH SYSTEM
  • AN INTRODUCTION TO PCORnet
  • PATIENT OUTCOMES RESEARCH TO ADVANCE LEARNING (PORTAL) NETWORK
  • NEW YORK CITY CLINICAL DATA RESEARCH NETWORK
  • DISCUSSION
• 3. Continuously Learning Health Care: The Value Proposition
  • IS THE TIME RIGHT FOR CONTINUOUSLY LEARNING HEALTH CARE
  • INCREASING EFFICIENCY AND ELIMINATING WASTE
  • IMPROVING OUR ABILITY TO CHOOSE WISELY
  • ESTABLISHING THE INFRASTRUCTURE TO PAY FOR VALUE
  • DISCUSSION
• 4. Integrating Clinical Research and Practice: Examples
  • REDUCE MRSA TRIAL
  • IMPROVE CARE NOW NETWORK
  • EMBEDDED RESEARCH AT GROUP HEALTH
  • RESEARCH AND PRACTICE IN A SAFETY NET SYSTEM
  • DISCUSSION
• 5. Creating the Conditions for Sustainability
  • THE LEARNING HEALTH CARE SYSTEM
  • EVALUATION AND IMPROVEMENT OF CARE DELIVERY
  • IMPROVING CARE FOR ME AND PATIENTS LIKE ME
  • LEVERAGING DATA FOR IMPROVEMENT
  • DISCUSSION
• 6. Addressing Issues of Regulatory Oversight
  • AN ETHICAL FRAMEWORK FOR LEARNING HEALTH SYSTEMS
  • APPROACHES TO DEALING WITH OVERSIGHT CHALLENGES
  • DISCUSSION
• 7. Governance That Accelerates Progress and Sustainability
  • ALIGNING RESEARCH WITH INSTITUTIONAL GOALS
  • DATA SHARING IN A COMPETITIVE ENVIRONMENT
  • GOVERNING INTERINSTITUTIONAL RESEARCH
  • DISCUSSION
• 8. Fostering the Well-Prepared Stakeholder Culture
  • CREATING A CULTURE OF LEARNING
  • CLINICIAN ENGAGEMENT
  • PATIENT ENGAGEMENT
  • DISCUSSION
• 9. Multiuse Infrastructure for Continuous Learning
  • PANEL DISCUSSION
  • DISCUSSION
• 10. Continuous Learning as an Executive Agenda Priority
  • BEYOND THE REDUCE MRSA TRIAL
  • PRIORITY OPPORTUNITIES FOR CEO LEADERSHIP TO MAKE A DIFFERENCE
  • CHALLENGES AND OPPORTUNITIES FOR ENABLING CONTINUOUS LEARNING IN HEALTH CARE ORGANIZATIONS
  • DISCUSSION
• 11. Recurring Workshop Themes
  • The business imperative for continuous improvement
  • Culture that produces value at speed
  • Failing fast and forward
  • The economic case for infrastructure for continuous learning
  • Alignment of research with organizational goals and priorities
  • Sustainability in patient partnerships
  • Implementation at scale
  • Good governance to enable big impacts
  • The ethical imperative for improvement
  • Partnerships to drive learning
  • A continuous improvement workforce
• References
• APPENDIXES
  • Appendix A Workshop Agendas
  • Appendix B Biographical Sketches of Workshop Speakers
  • Appendix C Workshop Attendees

Rapporteurs: Joe Alper and Claudia Grossmann.

This activity was supported by an unnumbered agreement between the National Academy of Sciences and the Patient-Centered Outcomes Research Institute (PCORI). The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity.

Suggested citation:

IOM (Institute of Medicine). 2015. Integrating research and practice: Health system leaders working toward high-value care: Workshop summary. Washington, DC: The National Academies Press.

NOTICE: The workshop that is the subject of this workshop summary 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.