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Strategies for Patient, Family, and Caregiver Engagement

Technical Brief Draft

Open for comment through Mar 2, 2020

These reports are available in PDF only (Draft Technical Brief [2.43 MB]; Draft Technical Brief Appendixes [1.4 MB]). People using assistive technology may not be able to fully access information in these files. For additional assistance, please contact us.

Structured Abstract

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 October 2019 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 grey 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, five on the health system level, and none on the community level. Eight reviews (five with studies having comparison groups, and 3 with studies lacking comparison groups) reported implementation outcomes. The reviews included studies per review ranging 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 decisionmaking (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 multi-component 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 decisionmaking also described multi-component 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.

Evidence Summary

Key Points

  • The majority of systematic reviews on patient and family engagement for chronic conditions focused on direct patient care engagement strategies.
  • The direct patient care engagement strategies most commonly included team-based care to support patient self-management, patient-provider communication using shared decisionmaking, 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 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, without 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 p 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. The searches were conducted in October 2019. 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, five on the health system level, and none on the community level. Eight reviews (five with studies having comparison groups, and 3 with studies lacking comparison groups) reported implementation outcomes. The reviews included a large number of studies (4111 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 3 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 decisionmaking (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 decisionmaking. Very few reviews focused on patients with multiple chronic conditions.

Self-management support strategies were mostly tested within multi-component 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, using 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 (HRQOL) 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 decisionmaking reviews described multi-component 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. Among 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 level 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 and 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.