Objective: The widely applied Chronic Care Model emphasizes the need for an “informed activated patient” and a “prepared and proactive team” to improve patient outcomes. This Technical Brief applies a framework to create a map of the currently available evidence on patient and family engagement strategies that have been used to help people manage chronic conditions.
Methods: We adapted a framework for patient, family, and caregiver engagement. Key Informants provided input on the framework for categorizing different types of engagement strategies. We searched PubMed and CINAHL from January 2015 to January 2020 to identify relevant systematic reviews and to identify original research articles focused on health system and community/policy levels, which were not covered well by systematic reviews. Our gray literature search focused on reports by national organizations.
Results: Guided by our framework, we categorized patient and family engagement strategies into direct patient care, health system, and community/policy levels. The search yielded 134 systematic reviews. Of those, 126 reviews focused on the direct patient care level, 5 on the health system level, and none on the community level. Eight reviews (five with studies having comparison groups and three with studies lacking comparison groups) reported implementation outcomes. The number of studies per review ranged from 0 to 488 studies for the direct patient care level. Reviews on direct patient care level engagement mostly focused on self-management support (88) and shared decision making (34), and many used mobile health and electronic health record tools to improve engagement. The majority included studies of adults (96), while only 14 focused on children. Self-management support strategies were mostly tested as part of multicomponent interventions. Multiple technology-based modalities were used. The most frequently reported clinical outcomes were adherence to medication/self-care plans, and measures of chronic disease control (e.g., hemoglobin A1c and blood pressure control). For self-management in adults, 26 reviews reported positive effects, 18 reported potential benefits, and 19 reported unclear benefits. None reported any harms. Most reviews of shared decision making also described multicomponent interventions. Seven showed positive effects, ten showed potential benefits, eight showed unclear benefits, and one showed no benefits. Health system–level strategies most commonly involved patients and family caregivers serving on patient and community advisory councils and participating in meetings or project teams. No rigorous evaluations were reported on these strategies. One original article was identified that described patient engagement at the community level and focused on a neighborhood-clinic partnership.
Conclusions: Patient and family engagement strategies with the greatest evidence pertain to self-management support for adults with chronic conditions. Use of technology to facilitate patient and family engagement is a promising approach. Few studies examined advanced care planning or interventions for patients with multiple chronic conditions. More research is needed to address a big gap in evidence on patient and family engagement at the health system and community/policy levels.