A Narrative Review of Patient and Family Engagement

Abstract

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 2000–2015. 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 occur 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. Conclusion 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.

Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway?

“…Patients and families should be engaged as partners at all levels of organization and decision-making, including goal setting, care planning with use, and assessing their care integration experience. 9,19 Assessment of the capabilities of the practice team is also integral to successful care planning to target areas for quality improvement and practice transformation. Measurements of specific capabilities can quantify efforts such as coordination within and between care teams, communication between primary care and/or specialty care or community partners, needed staff time and/or resources, and potential benefits to patients and the practice context.…”

“…Families and clinicians report a range of care experiences with designated care coordinators as part of their work. 9,19,48 A comprehensive approach to care coordination requires a cultural shift to embrace the full spectrum of health and its determinants, including social determinants of health. Such a shift may encompass structured routine screening and referral for social determinants, care coordinator training that extends across the medical and social service sectors, and collaborative care planning that may encompass finances, employment, housing, food security, transportation, and other social determinants.…”

Who represents me? A patient‐derived model of patient engagement via patient and family advisory councils (PFACs)

“…However, PFACs’ potential may be underutilized. While case studies suggest how PFACs could improve the safety and quality of patient care, systematic and structured reviews have repeatedly demonstrated a lack of rigorous evaluation and evidence of such impact . Much work remains to ensure PFACs can further patient‐ and family‐centred change in diverse health‐care settings …”

The Role of Integrated Care in a Medical Home for Patients With a Fetal Alcohol Spectrum Disorder

“…Often, families are distressed and need support and linkages to resources in the days after a diagnosis as they begin to process and begin their journey to support their child. Because the provision of patientand family-centered care is ideal in practice, 46 actively involving patients and families in decision-making is also important. Patients and families should be part of goal setting and creating, implementing, and updating a formal, written plan of care with family and/or patient input that is sensitive to their language, values, and culture.…”

“…47,48 Linking families with other families or caregivers with shared experiences can be helpful in diagnosis and long-term support for families. 46,49 After the diagnosis of an FASD, patients may need referrals to neuropsychologists, clinical psychologists, developmental and/ or behavioral pediatricians, child and adolescent psychiatrists, pediatric developmental therapists (speech, physical, and occupational therapy), and behavioral mental health clinicians and partners. Patients will also often need help with education, coordination, integration, and navigation of the needed services and supports to maximize the potential of their child with an FASD.…”