Key Points

• 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.

Background and Purpose

Patient engagement is increasingly described as essential to improving outcomes. The objective of this Technical Brief is to apply a logical conceptual framework to create a map of the currently available evidence on patient and family engagement strategies used to help people with chronic conditions. Report findings can inform decisions of healthcare leaders as well as highlight the areas in need of more research.

Methods

We followed processes established by the Evidence-based Practice Center Program for Technical Briefs, including interviewing Key Informants. Our protocol is posted on the program’s website (https://effectivehealthcare.ahrq.gov/products/family-engagement/protocol). The searches were conducted in January 2020. Details of the methodology can be found in the full report. Given the broad definition of patient and family engagement and the large body of evidence, we focused our search on systematic reviews, with supplemental searches for original research articles and gray literature in areas having a paucity of reviews.

Results

Building on the conceptualization of patient and family engagement by Carman et al, we categorized patient and family engagement strategies into strategies at the direct patient care, health system, and community/policy levels. The search yielded 134 systematic reviews. Of those, 126 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 reviews included a large number of studies (4,111 studies for direct patient care level, without excluding duplicates). Given the low number of reviews at the health system and community/policy levels, we searched for original articles and identified three studies on engagement at the health system level and one at the community level.

Reviews on direct patient care level engagement most commonly 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 14 focused on children. Many reviews focused on single medical conditions, most commonly among people with diabetes for self-management support, followed by patients with cancer and with cancer screening needs for shared decision making. Very few reviews focused on patients with multiple chronic conditions.

Self-management support strategies were mostly tested within multicomponent interventions. These strategies included (1) education and information sharing on chronic conditions and treatment options, (2) helping patients achieve behavior change via goal setting, self-monitoring and symptom management, use of action plans, problem solving, tracking data, and feedback, (3) facilitating communication with healthcare providers and adherence to self-care plans via reminders/alerts, remote monitoring, and decision support, and (4) providing psychosocial support including healthcare navigation assistance, connection to social services and peers, counseling, and cognitive behavioral therapy. Multiple delivery methods were used, including individual and group education programs. While some strategies incorporated technology as the sole means for connecting with patients, others included in-person approaches or a mix. Technology-based approaches included devices, sensor-based technologies, gaming, videoconferencing, remote monitoring, and texting. The most frequently reported outcomes were chronic disease management measures (e.g., hemoglobin A1c and blood pressure control) followed by health-related quality of life and medication adherence. For adult self-management, 26 reviews showed positive effects, 18 showed potential benefits, and 19 showed unclear benefits. None reported any harms. More details are provided in the report on studies of children and adolescents. The two reviews that focused exclusively on studies of patients with multiple chronic conditions showed unclear benefits, citing difficulty in operationalizing self-management for multiple chronic conditions and reduced ability to help these patients.

Most shared decision-making reviews described multicomponent interventions, including provider training and patient education, technology-enabled delivery modes (e.g., video and web-based tools), and decision support tools. Reported outcomes mainly included patient knowledge, activation, decisional conflict, and satisfaction. Few reviews reported on clinical outcomes. Seven showed positive effects, ten showed potential benefits, eight showed unclear benefits, and one showed no benefits. Within the two reviews that focused on use of patient portals, one reported provider perceptions that releasing abnormal or sensitive test results to patients could cause confusion or excess worry for patients, but there was no systematic measurement of harm.

Health system level engagement strategies most commonly included having patients and family caregivers serving on patient and family advisory councils and other committees within the health system; participating in meetings, on project teams, or forums and workshops to provide patients with skills to support engagement; or serving as instructors for healthcare professionals in training or as consultants. No rigorous evaluations reported on these strategies, and the studies were mainly limited to case reports and observational studies. Impacts of patient engagement have been reported on care processes and service delivery, priority setting, educational materials or tool development, physical space design, trainings for staff, and increasing staff awareness of patient perspectives.

No reviews and only one original article was identified that described patient engagement at the community level. The study evaluated efforts to strengthen engagement between community members and the Indian Health Service.

Limitations

This report has several limitations, including (1) use of systematic reviews rather than original studies for direct patient-care strategies due to the large body of evidence, (2) exclusion of studies on patient engagement in research, (3) focus on engagement of patients with chronic health conditions, excluding reviews on chronic disease prevention, and (4) no assessment of the risk of bias in the original studies.

Implications and Conclusions

Patient and family engagement strategies with the highest volume of evidence among adults with chronic conditions pertain to direct patient care using self-management support strategies. However, we identified inconsistent findings among reviews of self-management strategies, even within the same chronic condition. This is in part due to the heterogeneity of tested interventions, different measures, and low quality of the original studies. The evidence on engagement strategies in the pediatric population is limited by a small number of systematic reviews with few reporting on clinical outcomes. Use of technology as part of the patient and family engagement strategy is emerging as a promising approach. Few studies examined engagement strategies for advanced care planning or for patients with multiple chronic conditions. More research is needed to address a large gap in evidence on patient and family engagement at the health system and community/policy levels.