Background

Patient and family engagement refers to patients, families, and health care providers working in active partnership across various levels to help improve healthcare outcomes.¹ While a patient may engage with their healthcare provider devising strategies to manage their own health, they may also engage at a system level with other healthcare providers and leaders in efforts to improve the care provided to all other patients. Successful patient and family engagement has potential to reduce costs, improve care processes, reduce provider burnout and improve patient outcomes.^2,3 The widely applied and accepted Chronic Care Model emphasizes the need for having both an “informed activated patient” and a “prepared and proactive team” to improve patient outcomes.^4,5 Patient activation refers to the level at which a patient have the knowledge, skills, willingness and ability to manage their own health.⁶ Multiple studies have demonstrated that activated patients have better health outcomes and lower utilization of emergency health care services.⁷ Conversely, reduced patient engagement in health care is associated with significant, serious, or life-threatening adverse events.⁸

In the U.S. the prevalence of chronic diseases has been increasing, necessitating a shift towards care in the ambulatory and community settings that enable long-term, sustainable strategies for preventing and managing chronic disease.^9–11 Interventions, such as tailored coaching that increased patient activation, have been associated with improved intermediate outcomes, including chronic disease self-management behavior and reduced health care utilization.¹² Self-management education and support interventions have also improved outcomes and function among patients with single and multiple chronic diseases.^13–19

Despite the benefits of patient engagement, not all patients have the capacity to get engaged in their care, including children and patients with dementia or disability. Therefore, family and caregiver engagement strategies are needed to support vulnerable patients including children, the elderly, people at the end of life, and people with disabilities.^20,21

Clinicians and healthcare systems have key roles in facilitating patient and family engagement.²² Many tested interventions aim to improve clinicians’ communication skills and shared decision-making techniques,^23–27 in part because clinicians use complicated medical jargon, limiting patients’ understanding of their care.²⁸ Communication studies show that clinicians quickly interrupt patients, allowing less opportunity for listening to concerns and building rapport.²⁹ Patients and families may not feel empowered to speak up about their concerns in health care environments, with greater risks among marginalized patients and families, including those with limited English language proficiency.^30,31 Interventions that target patient-provider communication have improved patient satisfaction, as well as patient-centered health outcomes (e.g., symptoms of depression, anxiety, pain; management of blood pressure; and improvement in functional status).^{23–27,32,33}

Conceptual Framework

In this Technical Brief, we adapted a widely used conceptual framework on patient and family engagement interventions by Carman and colleagues, that categorizes strategies into the direct patient care level, health system or organizational level, or community/policy level (Figure 1).¹ We applied the definition of patient and family engagement from this framework as “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system and the community — direct care, organizational design and governance, and policymaking — to improve health and health care.”¹ We applied the adapted framework to create an evidence map displaying the evidence for patient and family engagement strategies.¹ We expanded the model related to examples of strategies and highlighting potential measures and outcomes. However, in recognition of the importance of the “continuum of engagement” (i.e., levels of how active the patient is in communication and health care decisions, and how involved the patient is in health care organization decisions) described in the original model, we focused our review on patient and family engagement that requires “involvement” and “partnership and shared leadership” (i.e., not solely consultation or one way communication) (see PICOTS, Table 1).

For the purposes of this report, we defined “direct patient care strategies” as those strategies that directly inform the patients’ own treatment decisions, health behaviors, or outcomes (e.g., self-management support, shared decision making, and communication strategies). Direct patient care strategies may be delivered by the patient’s primary care practice and provider, community-based organizations or the patient’s health insurer through case management and population health programs. We defined a “health system level strategy” as a strategy that engages patients and families in organizational activities and/or decision making and informs the delivery of care within a health care system, beyond the individual patient’s care (e.g., participation in an advisory committee or board membership). Examples include patient and family advisory councils, in which the patients and families provide feedback about how to improve the care processes and quality of care and patient experience to improve care for all patients, not just themselves. We defined a “community or policy strategy” as a strategy that engages patients, consumers, or citizens in policymaking or that engages communities in health care policies (e.g., a hospital-neighborhood partnership to address community’s concerns, disease-specific group of patients lobbying for more funding to study a rare disease, or a community group advocating for sugar-sweetened beverage or tobacco-related local policy changes to improve neighborhood public health). We acknowledge that many of these levels overlap, as it is possible that direct care engagement strategies could also yield improvements at the system-level, and patients engaged in hospital committees could also benefit directly by improving their own care practices.

In addition, in this report we used the term “patient and family engagement” to represent engagement of the patient and family, as well as non-family caregivers, who the patient deems part of his or her care team. In addition, we intended the term “patient and family engagement” to broadly include the engagement of other consumers and citizens for the purposes of improving the quality of patient care and health outcomes for people living in the community and served by the health care system.

Figure 1

Patient, family, and caregiver engagement conceptual framework.

Guiding Questions

This Technical Brief was guided by the following questions:

1. What patient engagement strategies have been studied to help patients, families, and caregivers manage their chronic conditions and improve patient health outcomes?

   1. What are the characteristics of the patients/conditions? What is the specific role for families and caregivers? Have the subpopulations of interest been studied in the literature?
   2. What are the characteristics of these patient and family engagement strategies?
   3. What outcomes, including harms, have been studied?
   4. Which elements must be implemented to have fidelity? Which elements can be adapted to reflect the local context without losing fidelity?
   5. What resources and costs are required to implement these strategies?
   6. What change management strategies support sustainment after implementation?
2. What gaps exist in the current research?

   1. Which patient engagement strategies identified by experts as currently relevant have no research evidence or inadequate evidence?
   2. For which patient engagement strategies are additional primary research studies needed to answer questions important to policy and practice of self-management?
   3. For which patient engagement strategies are there sufficient primary research studies that a new systematic review would add to current knowledge?