multiple definitions of patient- or person-centered care exist, each capturing important aspects of this type of care. Moreover, the concept itself has multiple names, ranging from “patient-centered care,” to “patient- and family-centered care,” to “patient activation,” to “patient engagement,” to “public engagement.”
Another challenge is determining who needs to be involved. Almost every person is a past, present, or future patient of the health care system. Moreover, each person often receives care from family caregivers, relatives, friends, and neighbors who support and assist those coping with both acute and chronic health problems, and who are vital to the patient throughout the care experience. While the term “patients” is used here for brevity, it always refers to patients, family and other caregivers, and the public. Similarly, the term “communities” includes all forms of community, such as those defined by geography, culture, disease or condition, occupation, and workplace.
Recognizing the complexity of the terms involved, several individuals and organizations have developed definitions for patient-centered care. One advocate for promoting patient-centered care defines it as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” (Berwick, 2009). The Institute for Patient- and Family-Centered Care outlines four concepts that underlie patient-centered care: respect and dignity, information sharing, participation, and collaboration (Institute for Patient- and Family-Centered Care, 2011). The National Quality Forum’s National Priorities Partnership characterizes patient-centered care as health care that “honors each individual patient and family, offering voice, control, choice, skills in self-care, and total transparency, and that can and does adapt readily to individual and family circumstances, and to differing cultures, languages, and social backgrounds” (NPP, 2010).
This chapter builds on the definition of patient-centered care outlined in Crossing the Quality Chasm: “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). The concept encompasses multiple dimensions, including respect for patients’ values, preferences, and needs; coordination and integration of care; information, communication, and education; physical comfort; emotional support; and involvement of family and friends. Crossing the Quality Chasm outlines several principles to help the system provide this kind of care: care should be based on continuous healing relationships, care should be customized according to patient needs and values, the patient should be the source of control, knowledge should be shared and information should flow freely, information should be provided to patients transparently, and