Introduction, 69

Information Needs for a Learning Health System, 70

Farzad Mostashari

Opening Access to High-Value Data Sets, 74

Todd Park

Ensuring Data Integrity: Adressing Privacy Protection and Proprietary Concerns, 87

Don E. Detmer

Introduction, 95

Investing Patients in the Research and Continuous Improvement Enterprise, 96

Sharon F. Terry

Public and Patient Strategies to Improve Health System Performance, 103

James B. Conway

Communicating with Patients About Their Concerns, Expectations, and Preferences, 110

Karen Sepucha

Introduction, 119

The Meaningful Use of Health Information Technology, 120

David Blumenthal

New Classes of Data, New Opportunities to Learn, 123

Daniel R. Masys, Jack M. Starmer, and Jill M. Pulley

Web 2.0 and Patient Engagement, 128

Kamal Jethwani and Joseph C. Kvedar

Introduction, 137

Public and Patient Information Access and Use as a Core Care Component, 138

George D. Lundberg

Health Information Technology–Based Approaches to Health Management, 145

Paul C. Tang

report, a learning health system requires that patients help chart the course and operation of the learning process.

In this context, the IOM, under the auspices of the Roundtable on Value & Science-Driven Health Care, focused the tenth workshop in its Learning Health System series on public and patient engagement and leadership­. This volume, Patients Charting the Course: Citizen Engagement and the Learning Health System, presents a summary of the issues and perspectives addressed at that meeting.

As discussed by many participants in the meeting, most health systems today are not centered on patients. Instead, volume drives service; supply influences demand; and clinician—not patient—preferences shape practice (Wennberg et al., 2007). The notion of patient-centeredness often still feels unfamiliar, even disruptive, for many of those unexposed to the advantages of such a culture (Berwick, 2009).

Patients have shown an interest in becoming more involved and learning more about their conditions. A Pew Research Center Survey found that 61 percent of adults go online to seek information on specific diseases, medical treatments, and other health subjects. Although the increased availability­ of health information is important, new communication approaches are needed to provide information that is reliable, relevant, and understandable so patients can make informed healthcare decisions.

Data and information are a first step toward improving communications between providers and patients. Providers will increasingly need to discuss with patients the risks and benefits of competing treatment options and engage patients in shared decision making about their treatment choices. This represents a shift away from the historical model of medicine toward one in which physicians and patients work together to manage complex conditions, and make decisions on the basis not only of the best medical knowledge, but also the patient’s life circumstances, preferences, and personal biology.

Recent legislative efforts and national interest around these issues have provided an important impetus for progress and prompted a reassessment of priorities and the articulation of practical next steps for developing a learning health system. The American Recovery and Reinvestment Act of 2009 (ARRA) included more than $1.1 billion to enhance the nation’s capacity for comparative effectiveness research and nearly $20 billion for the adoption and use of health information technology through the Health Information Technology for Economic and Clinical Health (HITECH) Act. Through incentives for the meaningful use of electronic medical records, the HITECH Act will encourage the adoption of electronic medical records by clinician practices and hospitals, which will enable improved access to clinical information, coordination of care across multiple healthcare settings, and a comprehensive record of a patient’s medical history. This will provide

the foundation for many aspects of the learning health system, including expanded clinical data for research, patient access to their own health information, and new models of care outside the traditional clinical encounter.

Signed into law one week before the workshop, the Patient Protection and Affordable Care Act of 2010 (ACA) underscored the importance of patient choice and engagement, including provisions to promote choice, accountability, consideration of patient preferences, and shared healthcare decision making. As this law is implemented, new opportunities will become available for establishing innovative models to deliver care, creating incentives to coordinate and improve care quality and value, and expanding the clinical workforce.

THE ROUNDTABLE AND THE

LEARNING HEALTH SYSTEM SERIES

The IOM Roundtable on Value & Science-Driven Health Care has since 2006,- provided a venue for health leaders from various stakeholder sectors—health professionals, patients, health system leaders, insurers, employers, manufacturers, information technology, research—to work cooperatively to address their common interest in improving the effectiveness and efficiency of health care. The Roundtable members have set the goal that, by 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date information and will reflect the best available evidence. Over the past five years, the Roundtable’s Learning Health System series of workshops has identified and considered the key elements whose transformation can be central to achieving this goal: clinical research, clinical data, information technology, evidence standards, healthcare tools, caregiver culture, patient engagement, and financial incentives. For each of these elements, the workshops have explored priorities and approaches integral to harnessing interests and expertise across healthcare sectors to drive improvements in the value of medical care delivered in the United States. The following publications summarizing these workshops offer perspectives on the issues involved, and identify priorities and projects in need of cooperative stakeholder engagement:

•The Learning Healthcare System (2007)

•Evidence-Based Medicine and the Changing Nature of Health Care (2008)

•Leadership Commitments to Improve Value in Health Care: ­Finding Common Ground (2009)

•Value in Health Care: Accounting for Cost, Quality, Safety, Outcomes, and Innovation (2010)