LeighAnne Olsen

As our nation enters a new era of medical science that offers the real prospect of personalized health care, we will be confronted by an increasingly complex array of health care options and decisions. The Learning Healthcare System considers how health care is structured to develop and to apply evidence--from health profession training and infrastructure development to advances in research methodology, patient engagement, payment schemes, and measurement--and highlights opportunities for the creation of a sustainable learning health care system that gets the right care to people when they need it and then captures the results for improvement. This book will be of primary interest to hospital and insurance industry administrators, health care providers, those who train and educate health workers, researchers, and policymakers. The Learning Healthcare System is the first in a series that will focus on issues important to improving the development and application of evidence in health care decision making. The Roundtable on Evidence-Based Medicine serves as a neutral venue for cooperative work among key stakeholders on several dimensions: to help transform the availability and use of the best evidence for the collaborative health care choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and, ultimately, to ensure innovation, quality, safety, and value in health care.

This volume reports on discussions among multiple stakeholders about ways they might help transform health care in the United States. The U.S. healthcare system consists of a complex network of decentralized and loosely associated organizations, services, relationships, and participants. Each of the healthcare system's component sectors--patients, healthcare professionals, healthcare delivery organizations, healthcare product developers, clinical investigators and evaluators, regulators, insurers, employers and employees, and individuals involved in information technology--conducts activities that support a common goal: to improve patient health and wellbeing. Implicit in this goal is the commitment of each stakeholder group to contribute to the evidence base for health care, that is, to assist with the development and application of information about the efficacy, safety, effectiveness, value, and appropriateness of the health care delivered.

1 Front Matter 2 Summary 3 1 Clinical Data as the Basic Staple of the Learning Health System 4 2 U.S. Healthcare Data Today: Current State of Play 5 3 Changing the Terms: Data System Transformation in Progress 6 4 Healthcare Data: Public Good or Private Property? 7 5 Healthcare Data as a Public Good: Privacy and Security 8 6 Creating a Next-Generation Data Utility: Building Blocks and the Action Agenda 9 7 Engaging the Public 10 8 Clinical Data as the Basic Staple of Health Learning: Ideas for Action 11 Appendixes 12 Appendix A: Workshop Agenda 13 Appendix B: Biographical Sketches of Workshop Participants 14 Appendix C: Workshop Attendee List 15 Appendix D: The IOM Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule 16 Other Publications in the Learning Healthcare System Series

As past, current, or future patients, the public should be the health care system's unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient's individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered. As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system.