care, as well as the ways in which the health care system falls short on this critical dimension (Winakur, 2012).
Clinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment. However, the structure, incentives, and culture of the system in which they work are often—perhaps usually—poorly aligned to support their efforts to respond to patients’ needs as their core priority. Recognizing the imperative to center on the patient, a learning health care system is one in which patients and their families are key drivers of the design and operation of the learning process. When patients, their families, other caregivers, and the public are full, active participants in care, health, the experience of care, and economic outcomes can be substantially improved.
Crossing the Quality Chasm underscores patient-centeredness as a core aim of the health care system, yet care often fails to meet this aim (IOM, 2001). Despite the Quality Chasm’s call to action more than a decade ago, patient-centered care still is not the norm, and users continue to find the health care system uncoordinated and stressful to navigate. As the complexity of the system continues to grow with advances in science (Chapter 2), patient engagement takes on increased importance as a means of ensuring that patients can find the right care for their individual characteristics, needs, preferences, and circumstances.
In these complex situations, patients and clinicians both need to be involved for optimal care. Clinicians supply information and advice based on their scientific expertise in treatment and intervention options, along with potential outcomes. Patients, their families, and other caregivers bring personal knowledge on the suitability—or lack thereof—of different treatments for the patient’s circumstances and preferences. Information from both sources is needed to select the right care option. It is important to note that patient-centered care does not mean simply agreeing to every patient request. Rather, it entails meaningful engagement on the options available in order to understand the patient and establish a dialogue between patient and clinician on the evidence and the decisions in play (Epstein et al., 2010; Fowler et al., 2011). The provision of patient-centered care can be complex and time-consuming, and requires broad involvement of the patient, the family, and the care team to consider all of the issues affecting the patient’s care.
This chapter explores the ways in which a learning health care system can fill some of the gaps in orienting and coordinating the U.S. health care system around people’s needs. First, the chapter considers what is currently known about focusing the health care system on people’s needs and preferences, sets forth a vision for how the system could be improved