in this regard, and summarizes the benefits of moving toward that vision. The chapter then investigates how this knowledge can be applied at different levels of the health care system, from the patient care experience to the broader system. Next is a discussion of communities of care and how they can incorporate those stakeholders not normally included in the health care system. The chapter concludes with recommendations for realizing the vision of a health care system that engages patients, families, and communities. Throughout, the discussion highlights ways in which a learning health care system can better incorporate patients, families, and the public in managing health and health care.
Informed and engaged patients, invested in their own health care as well as in the improvement of the broader health care system, are crucial to a learning system. Patients bring unique and important perspectives on their own care, on the experience in health care organizations, and on the coordination and cooperation among various elements of their care. Unfortunately, patients, their families and other caregivers, and the public all too often are not meaningfully engaged in care or as partners in its improvement. Moving to the vision of a system centered on people’s needs and preferences has the potential to bring multiple benefits for patients, the health care system, and the nation.
A Focus on the Patient
As noted, more than 10 years after Crossing the Quality Chasm highlighted the crucial role of patient-centered care, such care still is not the norm, and patients continue to find the health care system uncoordinated and stressful to navigate. A 2011 survey of public views of the health care system found that patients have difficulty accessing care, experience poor care coordination, and want a system that is more integrated and patient-centered. Seven of 10 adults surveyed reported difficulty in making doctor’s appointments when they needed them, getting advice over the phone, or receiving care after hours. Nearly half of adults reported problems with care coordination, notification of test results, and communications between primary care providers and specialists, and one-third said the health care system was poorly organized (Stremikis et al., 2011).
The lack of patient focus is particularly evident in patient communications, especially about care options. Surveys of patients who have recently made a medical decision have found that those patients often did not receive critical information about the risks and benefits of the treatment and intervention choices under consideration (Fagerlin et al., 2010; Lee et al.,