This final report is available in PDF only (Technical Brief [3.9 MB]; Disposition of Comments [513.2 KB]); and report data available in a Systematic Review Data Repository file. For additional assistance, please contact us.
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.
- The majority of systematic reviews on patient and family engagement for the management of chronic conditions focused on direct patient care engagement strategies. For this report, direct patient care strategies are defined as strategies that directly inform the patients’ own treatment decisions, health behaviors, or outcomes (e.g., self-management support, shared decision making, and communication strategies).
- The direct patient care engagement strategies most commonly included team-based care to support patient self-management, patient–provider communication using shared decision making, and mobile health and electronic health record tools to improve engagement.
- The direct patient care engagement strategies with the highest volume of evidence (i.e., several large randomized controlled trials (RCTs)) included group-based educational programs to promote chronic disease self-management by peers and other healthcare professionals; web-based and short message service interventions for cancer survivors; promising telehealth programs to promote communication, self-monitoring, and counseling; and mobile health to promote weight loss.
- Few systematic reviews or original articles focused on patient and family engagement strategies at the health system or community/policy levels. For this report, we defined a "health system level strategy" as a strategy that has an impact beyond the individual patient’s care (e.g., informing changes to the services of the clinic and health care system). 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. We did not identify any RCTs or high-quality observational studies of health system interventions. Most existing studies at the health system level examined the impact of patient and family engagement on care processes or service delivery, policy or planning documents, and educational materials or tool development.
- Patient and family advisory councils and having patients serve on committees are the most commonly studied health system level patient and family engagement strategies.
- Health system level patient engagement strategies demonstrated some benefits, such as improvements in health care processes, development of organizational plans and policies, and education or tools.
- The single article addressing a community level patient engagement strategy described a neighborhood-clinic partnership in the Navajo Nation aimed at improving care for people living with diabetes.
Suggested citation: Bennett WL, Pitts S, Aboumatar H, Sharma R, Smith BM, Das A, Day J, Holzhauer K, Bass EB. Strategies for Patient, Family and Caregiver Engagement. Technical Brief. (Prepared by the Johns Hopkins University Evidence-based Practice Center under Contract No. 290-2015-00006-I.) AHRQ Publication No. 20-EHC017. Rockville, MD: Agency for Healthcare Research and Quality; August 2020. DOI: 10.23970/AHRQEPCTB36. Posted final reports are located on the Effective Health Care Program search page.