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