A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home".

BACKGROUND: Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup, as part of the Society of General Internal Medicine's 2013 Research Conference. OBJECTIVE: To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. METHODS: We conducted a narrative review of relevant articles published from 2000 to 2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. RESULTS: Despite the theoretical importance of PFE and policy recommendations that PFE occurs at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. CONCLUSIONS: Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high-quality health care and optimize outcomes.

Reinforcing the essential role of families through first impressions of the physical environment.

The physical environment in all of its aspects of space, structure, millwork, furniture, materials, flow, signage, and art has great potential to set a positive tone and invitation for families to be partners in the care of their infants. This article describes design strategies that create a series of positive welcoming first impressions throughout a NICU to support family caregiving and participation as parents of their infant and essential members of the care team.

Promoting Patient- and Family-Centered Care Through Personal Stories.

Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among patients, their families, and health care professionals. It redefines the relationships in health care by placing an emphasis on collaborating with patients of all ages, and their families, at all levels of care, in all health care settings, and in organizational change and improvement. This collaboration ensures that health care is responsive to an individual's priorities, preferences, and values. In patient- and family-centered care, patients define their "family" and determine how they and their family will participate in care and decision making. While patient- and family-centered care can improve the experience of care, safety, and quality, it also can improve the learning environment for students and trainees. The author shares personal stories to illustrate the core concepts of patient- and family-centered care, when they are present in health care interactions, and when they are not. Drawing from these stories and the author's experience in working with academic medical centers and other health care organizations over many decades, recommendations for changes in medical education are suggested that can contribute to the development of a health care workforce with the skills and commitment to partner respectfully, effectively, and authentically with patients and families. The implementation of the Affordable Care Act gives new impetus for building a health care delivery system and related educational programs to support patient- and family-centered practice.

Partnering With Patients, Families, and Communities.

BACKGROUND AND OBJECTIVES: Collaborating with patients, families, and communities is a core principle of family medicine. However, the health care system in the United States has grown increasingly complex, fragmented, and difficult to navigate. This system, focused on disease-specific care delivered by specialists, often treats patients as the objects of care rather than as partners in care. Family Medicine for America's Health (FMAHealth) offers an opportunity to challenge the status quo in collaborative care through enhanced patient outreach and community engagement. With a central focus on improving health and achieving the Triple Aim, the FMAHealth initiative recognizes that successful transformation of the US health care system requires collaborative partnerships between clinicians, patients, families, and communities. Patient and population-level outcomes can be improved through shared decision making; application of new technology; and authentic partnerships with patient, families, and communities. Broader collaboration in practice transformation, research, and policymaking can lead to identification of common goals and mutually embraced transformation. The discipline of family medicine aspires to encourage patients, families, and communities to demand change as consumers, as citizens, and as voters.

Designing the neonatal intensive care unit for optimal family involvement.

The design of a new neonatal intensive care unit provides an opportunity to ensure that the new facility best meets the needs of the infants and families whom the unit serves. In design planning,administrators, staff, family members, and the architect must work together in a self-education process that entails examining current design standards, exploring exemplary facilities at other institutions,defining the priorities and needs of infants, families, and staff, and deciding how to respond to them. The involvement of family members in this important work can help ensure that the facility is responsive to families and supports the family as the primary caregiver and decision maker for the infant. Such an environment will lead to improved health and developmental outcomes for infants and greater family and staff satisfaction.

Patient- and family-centered perinatal care: partnerships with childbearing women and families.

Providing patient- and family-centered care is not a simple endeavor. It requires a transformation in organizational culture that is reflected in a myriad of details at the departmental, clinical, and individual provider and patient levels. Patient- and family-centered practitioners know that it is not a recipe or formula of specific practices, but an evolving approach that guides policy and program development, facility design, decision making, and daily interactions throughout the healthcare system. Today, momentum for patient- and family-centered care continues to build. It is supported by a growing body of research and by prestigious organizations that are committed to involve patients and families in care and in the redesign of healthcare for the 21st century to meet the recommendations of the IOM report. This article outlines the concepts of patient- and family-centered care and describes how they link with and differ from traditional concepts of family-centered maternity care. Partnerships with childbearing women and their families in clinical settings and in healthcare redesign that enhance quality, safety, and experience of care are described.