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Bennett WL, Pitts S, Aboumatar H, et al. Strategies for Patient, Family, and Caregiver Engagement [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2020 Aug. (Technical Brief, No. 36.)

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Strategies for Patient, Family, and Caregiver Engagement [Internet].

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Results

To organize the results, first, we presented the findings from the Key Informant interviews. Following the interviews, we presented the findings by Guiding Question. Within Guiding Question 1, we presented the results by level of engagement (see Figure 1). Within the direct patient care engagement level, we presented Guiding Question 1.a through 1.c by the population included in the reviews (i.e., adults, children, and then reviews that included both adults and children) followed by Guiding Question 1.d through 1.f, focused on implementation outcomes. Guiding Question 2 includes the overall evidence map to summarize the evidence and gaps.

Results of the Key Informant Interviews

We completed three 1-hour interviews with eleven Key Informants. Box 2 describes the expertise of the Key Informants.

Box 2Key Informants’ expertise

Clinicians (n=5)

  • Family Medicine
  • Internal Medicine
  • Director of Nursing

Health systems perspective (n=2)

  • Patient Education, Vanderbilt University Medical Center
  • Center for Health System Improvement, University of Tennessee Health Sciences Center

Researchers (n=2)

  • Center for Health Equity Research, University of North Carolina School of Medicine
  • American Institutes for Research

Payer perspective (n=1)

  • Anthem, Inc.

Patient/Caregiver/Advocate perspective (n=4)

  • Elder Caregiver
  • Parent
  • Patient
  • Patient is Partner, LLC
  • Institute for Patient and Family Centered Care
  • Johns Hopkins Children’s Center Pediatric Family Advisory Council

Box 3 provides the key messages identified during the interviews. Key Informants highlighted the challenge of defining what patient and family engagement means, and how to implement and measure it in a variety of clinical and community settings. Key Informants were generally in agreement about the proposed conceptual model (see Methods) for this review. Key Informants described a broad range of strategies that could be considered patient, family, and caregiver engagement, and noted that sometimes the strategies overlapped with each other.

Box 3Key messages from the Key Informants

Patient engagement strategies

  • Patient portals
  • Advanced care planning
  • Shared decision making
  • Patient and family advisory groups
  • Clinician training
  • Health coaching/health education
  • Daily hospital rounding at the bedside

Gaps in patient engagement

  • Gaps in communication and interaction with patients or poor communication
  • Weaknesses in the outpatient care systems

Challenges for implementation

  • Lack of supporting evidence
  • Lack of dedicated staff, funding, health system support
    Lack of willingness to participate – providers and patients

For direct patient care engagement, Key Informants shared their opinions about several models that are “well studied but not yet widely implemented,” including daily inpatient multidisciplinary team rounding at the patient’s bedside to review the plan of care with the patient and family, embedding of diabetes health educators into federally qualified health centers to support patients with low health literacy, and tools to facilitate shared decision making and advanced care planning.

For the level of health system engagement, Key Informants described the impact of the patient portal within the electronic health record that facilitates electronic communication with providers. Patient stakeholders valued the access to providers and quick responses they receive. Providers highlighted the challenges involved with managing the types and volume of patient requests and the possibility that patients with lower literacy or technology skills may become more marginalized. In addition, Key Informants highlighted the trend that health systems are widely implementing Patient and Family Advisory Councils to advise about a wide range of programs and initiatives. The challenge of these councils continues to be engaging diverse patients with a wide range of health care needs and including the voice of vulnerable populations. Finally, insurance companies and other payers (e.g. Medicaid and Medicare plans) are also working to incentivize patient and family engagement through value-based purchasing models and the enhancement of care coordination through their own population health programs.46

Using our “word cloud” brainstorming tool (Appendix G), Key Informants highlighted the challenges to implementing these strategies, including: a medical culture that does not prioritize patient and family input; lack of evidence for return on investment; and lack of devoted resources for implementation, evaluation, and evidence generation/dissemination. Thus, discussions with Key Informants helped to identify important aspects of strategies to examine in this review.

Results of the Published Literature Search

Figure 2 shows the search flow diagram for our main search focused on systematic reviews. The search for systematic reviews identified 868 references published between 2015 and 2020. Title and abstract review selected 325 references for full text review. One hundred thirty-four systematic reviews met the eligibility criteria. One hundred and twenty six reviews addressed direct patient care strategy, five reviews addressed health care system level strategy, and eight reviews (five with studies having comparison groups and 3 with studies lacking comparison groups) reported implementation outcomes (e.g., barriers, facilitators, resources, costs, change management). A listing of excluded studies is included in Appendix D.

Figure 3 shows the search flow diagram for original studies not included in the systematic reviews that described health system or community-level patient and family engagement strategies. A list of original studies focused on direct patient care strategy is included in Appendix F. We identified 4 original studies focused on these strategies. A listing of excluded studies is included in Appendix E.

Figure 2 is the search flow diagram showing the search and screening results for our systematic review. We identified 868 unique systematic reviews out of which 543 were excluded at level 1 title and abstract screening and 191 more articles were excluded during level 2 full text review (See Appendix D for list of excluded articles with reason(s) for exclusion). Finally, we included 134 articles in our review; 126 for direct patient care, 5 for healthcare organization and system, and 8 for implementation of strategies (some studies are overlapping with direct patient care and health care organization and system).

Figure 2

Search flow diagram for systematic review. * Total exceeds the number of citations in the exclusion box, because citations could be excluded for more than one reason **Overlapping with direct patient care and health care organization and system

Figure 3 shows the search and screening results of original studies. Total 4,712 studies identified through electronic databases. Of these, 4,439 were excluded at level 1 title and abstract screening and 124 more studies were excluded during level 2 full text review (See Appendix E for list of excluded original articles with reason(s) for exclusion). Finally, 145 original articles were considered as of interest, of these, 141 on direct patient care level (see Appendix F), 3 for health care organization and system level, and 1 for community and policy level.

Figure 3

Search flow diagram for original studies. *Total exceeds the number of citations in the exclusion box, because citations could be excluded for more than one reason

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

We identified 131 systematic reviews addressing patient engagement strategies to help patients, families and caregivers manage their chronic conditions and improve patient health outcomes. Of these, 126 focused on direct patient care strategies and five focused on health system strategies. We did not find any systematic reviews that primarily focused on community/policy strategy. The search for original research not included in the reviews identified three articles for health system strategies and one for community/policy strategy.

We presented our results for Guiding Question 1 regarding patient and family engagement strategies using the following format:

Overview of Direct Patient Care Strategies (Guiding Question 1.a-1.c)

Definition: Direct patient care strategy is defined as directly informing patients’ own treatment decisions, health behaviors, or outcomes (e.g. self-management support, shared decision making, and communication strategies.

We identified 126 systematic reviews evaluating direct patient care engagement strategies, with the number of included studies per review ranging from 0 to 488 studies. The range of RCTs included in these reviews were 0 to 105. We described the systematic reviews by three categories of strategies (self-management support, shared decision making/communication, and other).

Figure 4 shows the number of systematic reviews by study population (adults, children, adults and children) and across the three categories of direct patient care strategies. The majority (n=88) of reviews focused on self-management support (e.g., counseling, team-based care) and 34 reviews focused on shared decision making or enhanced patient-provider communication. Four reviews focused on other direct patient care engagement strategies. Of the 126 systematic reviews, most (n=96) studied strategies used with adults, 16 studied strategies used with children, and 14 included strategies used with both children and/or adolescents/adults (Figure 4).

Figure 4 shows number of systematic reviews addressing direct patient care level of patient and family engagement strategies, by age group. Of the 126 systematic reviews, 96 studies included only adults, 16 studies included adults and children both, and 14 studies included only children as population of interest.

Figure 4

Number of systematic reviews addressing direct patient care and family engagement strategies, by age group (n=126).

Figure 5 shows the modality (e.g., types of teams, tools or technology) for each type of direct care engagement strategy across all 126 systematic reviews. Across all age groups, the majority of reviews focused on self-management support, and among those, most reviews included nurses or case managers delivering the engagement intervention. The next most frequent modality for delivering the engagement intervention was mobile health. Among the shared decision-making interventions, most reviews focused on education and counseling, followed by engagement by nurses or case managers.

Figure 5 is a clustered bar chart showing the intervention modality for each type of direct care engagement strategy: self-management support including health behavior change, shared decision making or patient –provider communication, and other.

Figure 5

Intervention modality by direct patient engagement strategies (self-management support, shared decision making, or other) in systematic reviews (n=126).

Figure 6 shows the distribution of reviews by year of publication and the number of reviews focused on technology (e.g., mobile health, electronic health record). We described the reviews that assessed the role of the patient portal, electronic health record, or mobile health within their respective sections. In 2015, 14 published reviews focused on technology, and many of these specifically assessed the role of the patient portal or secure messaging within the electronic health record on patient self-management and communication.

Figure 6 is a stacked column chart showing the distribution of reviews on direct patient care strategies, by year of publication and the number of reviews focused on technology. Of the 126 reviews published from 2015 to 2019, 49 reviews focused on technology.

Figure 6

Systematic reviews on direct patient care strategies, by year and focus on technology (n=126).

Direct Patient Care Strategies – In Reviews Including Adults With Chronic Conditions (Guiding Question 1.a-1.c)

We found 96 systematic reviews that reported on direct patient care engagement strategies among adults. Of these, 66 reviews focused on self-management support (e.g., counseling, team-based care) and 26 focused on shared decision making or enhanced patient-provider communication. Four reviews focused on other direct patient care engagement strategies. (Appendix B and Figure 4).

Self-Management Support

We identified 66 systematic reviews (included studies ranged from 2 to 350; with 2 to 67 RCTs) evaluating self-management support strategies for adults.

Figure 7 shows the distribution of chronic medical conditions in these reviews. The systematic reviews focused on a range of chronic conditions including diabetes mellitus, cardiovascular disease, cancer or cancer screening, kidney disease, mental health, neurologic disease, respiratory disorders, and multiple chronic conditions. The most commonly targeted conditions were diabetes mellitus (n=26), cardiovascular disease and hypertension (n=20), respiratory disorders (n=17), and mixed chronic conditions (n=20).

Figure 7 is a clustered bar chart showing the distribution of chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level among adults (n=96). Medical conditions included were: diabetes mellitus, cardiovascular disease, cancer or cancer screening, kidney disease, mental health, neurologic disease, respiratory disorders, and multiple chronic conditions.

Figure 7

Chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level among adults (n=96). CVD = cardiovascular disease Other category included = kidney (more...)

The 66 systematic reviews focused on self-management support tested a wide range of engagement strategies to help patients engage in their healthcare and support them in self-management of their chronic conditions. The strategies and interventions frequently incorporated multiple components. These components included the following: (1) education and provision of information on health conditions and treatment options; (2) helping patients achieve behavior change via coaching and motivational interviewing, goal-setting, self-monitoring and symptom management, using action plans, problem-solving, tracking data on status and progress, and feedback provision; (3) facilitating communication with healthcare providers and adherence to treatment and self-care plans via reminders, alerts, logging, 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 interventions. Multiple delivery methods were used, including individual and group education programs that used face-to-face, telephonic, computer-based, and other online platforms. While some strategies incorporated technology as the sole means for connecting with patients (e.g., text messaging and digital coaching), others included in-person approaches (e.g., nurses doing home visits) or a mix of technology-based and in-person approaches (e.g., initial in-person sessions followed by e-mail and text followup). Technology-based approaches included: computer- and mobile-based devices, with or without internet connections; sensor-based technologies; gaming technology; videoconferencing; remote monitoring; and text messaging. The people involved in delivery of these strategies included physicians, nurses, occupational therapists, social workers, health educators, dieticians, psychologists, physiotherapists and other healthcare professionals, health coaches (often nurses with additional coach training), community healthcare workers, and peers (lay people with similar conditions).

Seven systematic reviews examined use of the engagement modality of the electronic health record’s patient portal or secure messaging system for supporting patient self-management.47–53

Figure 8 shows the distribution of the outcomes addressed in the systematic reviews of self-management among adults, which included the following outcomes: chronic disease clinical outcomes (e.g., hemoglobin A1c, blood pressure), health care utilization (e.g., re-admissions and emergency department use), adherence to medication or self-management tasks, patient satisfaction or experience, quality of life, decisional support outcome, and mortality. The most frequently reported outcomes were adherence to medication or self-management tasks (77%), chronic disease clinical outcomes (66%), quality of life (44%), and health care utilization (23%).

Figure 8 is a stacked bar chart showing the distribution of the patient and family engagement outcomes assessed for different types of interventions at the direct patient care level, among adults. Outcomes are chronic disease clinical outcomes, decisional support outcome, health care utilization, medication or self-management adherence, mortality, patient satisfaction or experience, and quality of life.

Figure 8

Patient and family engagement outcomes assessed for different types of interventions at the direct patient care level, among adults, as reported in systematic reviews (n=96).

Figure 9 shows the findings by strategy. While 40 percent of the systematic reviews showed definite positive effects, 28 percent showed potential benefits, and 28 percent could not make any conclusions about benefit. No reviews reported any harm.

Table 2 reports the findings by strategy and health condition. Reviews of self-management support for diabetes and cardiovascular disease, and reviews of shared decision- making for cancer and cancer screening commonly reported benefits. We found two reviews that focused on transitional care for adults with chronic conditions and both reported benefits.

Thirteen systematic reviews focused on self-management support for diabetes mellitus and reported on diabetes outcomes. Of those, four showed benefits for measures of glycemic control and diabetes knowledge,54–57 and one showed cost benefits for educational support interventions.58 Benefits were unclear for the impact on quality of life and utilization. Six systematic reviews focused on self-management support interventions among cancer patients, and three showed potential and clear benefits.59–61 One of those was a systematic review and meta-analysis of 34 RCTs of web-based self-management support interventions for cancer survivors. The meta-analysis showed positive effects on fatigue, depression, anxiety, and overall quality of life. The communicative functions of the web-based interventions had showed benefits, particularly access to other peers.59 Out of three systematic reviews focused on self-management support for cardiovascular disease, one showed no benefits 62 and two showed mixed findings.63,64 Self-management interventions showed promising benefits for improving overall risk factor control among patients with stroke.65 For adults with asthma, one review showed low to moderate quality evidence for improvement of asthma-specific quality of life, asthma severity, and lung function tests with chronic disease management programs of at least 3 months duration with self-management support as a component along with healthcare professional support, care coordination, and/or system level components.66

Two large systematic reviews showed benefits to low-income, underserved, and racial and ethnic minority patients from interventions delivered by community health workers, specifically in the area of diabetes control, hypertension, and cancer screening behaviors.54,67 Two systematic reviews that only included studies of patients with multiple chronic conditions showed unclear benefits, citing difficulty in operationalizing self-management for multiple chronic conditions and a reduced ability to help these patients.68,69

One systematic review reported findings of a pooled analysis including 2,742 patients in which phone text messaging interventions doubled the odds of medication adherence. However, the authors cautioned that more research is needed given short study durations and use of self-reported medication adherence measures.70

Two reviews focused on studies involving caregivers. One study, which looked at a broad range of patient- and family-centered self-care interventions for patients with several types of chronic conditions,71 included nine RCTs and showed positive impact on reduced rehospitalizations with varied impact on health-related quality of life (HRQOL). The other systematic review focused on studies of self-management support interventions for patients with chronic obstructive pulmonary disease (COPD) and chronic heart failure. The review did not find evidence of additional improvement in patient HRQOL among those studies that involved caregivers compared with the rest of the studies.72 Among the eight systematic reviews focused on patient portals as engagement modality, one study focused on a clinical outcome (hemoglobin A1c 53) and the other studies focused on patient experience, patient knowledge, and patient empowerment. The systematic review by Kuo and colleagues included 11 studies that addressed the role of the patient portal to support diabetes self-management and found that 7 of the 11 studies showed improvement in patients’ hemoglobin A1c with the use of secure messaging.53

Figure 9 is a clustered column chart showing the percentage of systematic reviews reporting benefits of different types of direct patient care interventions for improving patient and family engagement, among adults. While 37.5 percent of the systematic reviews reported definite positive benefits, 29 percent reported potential benefits, 29 percent could not make any conclusions about benefits, and around 4 percent reported no benefits of direct patient care engagement interventions. No reviews reported any harm.

Figure 9

Percentage of systematic reviews reporting benefits of different types of direct patient care interventions for improving patient and family engagement, among adults, as reported in systematic reviews (n=96) . Unclear benefit = In five reviews of self-management, (more...)

Table 2. Number of systematic reviews reporting benefits among adults, stratified by interventions and conditions.

Table 2

Number of systematic reviews reporting benefits among adults, stratified by interventions and conditions.

Shared Decision Making or Patient-Provider Communication

We identified 26 systematic reviews evaluating shared decision making or patient-provider communication engagement strategies for adults with chronic disease (Appendix B). The systematic reviews that evaluated shared decision making or patient-provider communication included between 4 and 120 studies each (with a range of 1 to 105 RCTs). The shared decision-making reviews focused on a range of chronic conditions, including diabetes mellitus, cardiovascular disease, cancer or cancer screening, kidney disease, mental health, neurologic, respiratory, and multiple chronic conditions.

The systematic reviews most often focused on cancer/cancer screening (n=9), mixed chronic conditions (n=7), mental health conditions (n=3), and diabetes (n=2). For example, the systematic review by Stovell and colleagues identified 11 RCTs that reported on shared decision-making outcomes in patients with psychosis (Figure 7).73

Most shared decision-making interventions involved multiple components, including provider trainings and patient education tools, which included technology-enabled delivery modes (e.g., video, web-based tools) and decision supports. The largest systematic review (n=105 studies), a Cochrane review by Stacey and colleagues, broadly assessed decision aids for people facing health treatment or screening decisions.74 This review also evaluated whether studies had considered the health literacy of their patient populations, such as adapting tools for lower literacy patients.74 Most interventions included guidance and coaching for patients and training for physicians, as well as education for patients.74 Two systematic reviews specifically evaluated shared decision-making engagement strategies for advanced care planning.75,76 The systematic review by Vermunt and colleagues focused on collaborative goal setting for older patients with chronic diseases 75 and reported on five interventions included in eight studies, most commonly reporting on tools and team-based discussions. Two systematic reviews examined the role of the electronic health record’s patient portal or secure messaging system as an engagement strategy to enhance patient-provider communication.52,77 One systematic review focused on patient engagement using an inpatient portal for communication,52 and the other review focused on the outpatient clinical setting.77

Figure 8 shows the frequency of outcomes reported in the studies involving the engagement strategy. Most of these systematic reviews focused on patient-reported outcomes including patient activation, patient knowledge, patient’s decisional conflict, and satisfaction with the decision-making process. Few reviews reported on clinical outcomes. The systematic review by Kashaf and colleagues reported on shared decision making among patients with type 2 diabetes and showed a lack of association with shared decision making and outcomes of glycemic control, patient satisfaction, quality of life, medication adherence, or trust in physician.78 The systematic review by Vermunt and colleagues included eight studies and showed statistically significant improvements in process measures, including application of goal setting for older patients with chronic diseases in the four intervention studies.

Figure 9 shows the findings on benefits of shared decision-making interventions, as reported by the systematic reviews. Overall, systematic reviews showed an unclear or potential benefit of the interventions on the patient-reported and documentation outcomes, with few studies reporting clinical benefits. Among the two studies focusing on the patient portal to enhance patient-provider communication, the outcomes focused on patient experience, patient knowledge, and patient-provider communication. One study noted, but did not systematically measure, harms, including provider perception that releasing abnormal or sensitive test results to patients could cause confusion or excess worry for patients.

Other Interventions

We identified four systematic reviews that focused on engagement around care transitions,79,80 advanced care planning,81 and specific educational programming for patients undergoing peritoneal dialysis.82

The two reviews on transitional care support strategies among adults with chronic disease included a range of engagement interventions with patient education and support (e.g., motivational interview/individualized face-to-face coaching, follow up phone calls, and home visits), as well as care coordination components (e.g., coordination of hospital and primary care, medication management).79,80 Both reviews showed positive impact on outcomes. The largest, a systematic review and meta-analysis that included 92 studies from Europe, Asia, North America, and Oceania,79 focused on patients 65 years of age and older with at least one chronic disease. The review showed that, compared with usual care, interventions to help support these patients after hospitalization reduced mortality and healthcare utilization (number needed to treat to reduce mortality at 3 months was 50; to reduce readmissions at 3 months was 7), without significant differences in quality of life.

A Cochrane review by Coulter and colleagues examined 19 studies (16 RCTs) focused on advanced care planning for adults with long-term or chronic health conditions. The engagement interventions included a variety of tools to facilitate goal setting and action planning, including patient information packets (e.g. digital versatile discs or books), structured consultations with health coaches, and individual and group visits. Fifteen of the 19 studies showed a positive effect in at least one outcome, such as physical health, psychological health and health behaviors, and three studies reported on hospital readmissions, medication usage and cost-effectiveness.81

Among the systematic reviews of direct patient care interventions in adults, 8 reviews included patients with multiple chronic conditions (5 with self-management support interventions, one with shared decision-making intervention and 2 with transitional care interventions). Five of the 8 were deemed to have positive benefit (see Table 2).

Direct Patient Care Strategies – In Reviews Including Children With Chronic Conditions (Guiding Question 1.a-1.c)

We identified 14 systematic reviews evaluating direct patient care engagement strategies for children and adolescents with chronic disease (Figure 4). One review focused on adolescents alone (12 to 18 years of age);83 six on children and adolescents (0 to 18 years of age);84–89 one on adolescents and young adults (11 to 25 years of age);90 and, six on children, adolescents, and young adults (0 to 28 years of age).91–96 The 14 reviews included studies with a range of 0 to 93 studies (included RCTs ranged from 0 to 93).

Figure 10 shows the chronic health conditions reported in the 14 systematic reviews that reported on direct patient care engagement strategies in children and adolescents. The most frequently examined conditions were diabetes mellitus (9 reviews) 83,84,86,91–96 and asthma (8 reviews),84,86,91–96 followed by cystic fibrosis (5 reviews),83,84,91–93 cancer (5 reviews),84,86,93–95 and blood disorders (4 reviews).84,86,89 93 Five systematic reviews included studies with family caregivers (i.e., parents/guardians),84,86,87,89,96 including one in which caregivers were the primary population of interest.84 No systematic review in this group specifically intended to examine a vulnerable patient population. Of the 14 systematic reviews, three examined strategies primarily used in the home,84,91,94 two focused on strategies primarily used in the clinic setting,87,89 three reported on strategies primarily used in the inpatient setting,83,86,90 and four focused on strategies used in multiple settings.92,93,95,96 Three reviews included school and/or camp settings.92,93,96

Figure 10 is a clustered bar chart showing chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level, among children and adolescents. The two interventions are self-management support and shared decision making. For each intervention, the eight chronic medical conditions listed are cancer or cancer screening, CVD and hypertension, diabetes mellitus, mental health, mixed chronic conditions, multiple chronic condition, other, and respiratory.

Figure 10

Chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level, among children and adolescents (n=14). CVD = cardiovascular disease

In the 14 systematic reviews of direct patient care engagement strategies in children and adolescents, the only engagement strategies evaluated were self-management support (10 reviews) and shared decision making (4 reviews) (Figure 5). Three reviews evaluated self-management engagement strategies in the context of transitions of care, including team-based care, education/coaching sessions or counseling, and peer/lay-support.83,86,90 Three reviews on direct patient care engagement strategies focused on technology (i.e., mobile applications, web-based care, and/or video games) and four reviews described studies where at least one component of education/coaching sessions was delivered in combination with technology. For example, a systematic review by Charlier and colleagues reviewed the effectiveness of health-related video games on the self-management skills of children, adolescents, and young adults.95

Among the four systematic reviews in children and adolescents that evaluated shared decision-making strategies, two reported on interventions with education/coaching sessions and decision aids.87,89 The systematic review by Cheng and colleagues examined the use of shared decision making in children and adolescents with mental health disorders. Most of the RCTs included in the review showed that parents using shared decision making with providers had lower decisional conflict, and more engagement with treatment, and more of the parents’ priorities were addressed.87 Wyatt and colleagues also demonstrated a significant reduction in decisional conflict in a meta-analysis of nine studies that contained a heterogenous population of children with and without chronic disease.89

The 14 systematic reviews of direct patient care engagement strategies in children and adolescents reported on the following engagement outcomes: quality of life (8 reviews), medication or self-management adherence measures (7 reviews), and chronic disease clinical outcomes (6 reviews) (Figure 11). Two reviews reported healthcare utilization, decisional support, and patient experience/satisfaction measures. In the largest review for this population (n=93 studies), Knafl and colleagues described the nature of family engagement interventions for children with chronic disease.84 This review reported that engagement strategies promoting family function (i.e., problem solving, communication skills, cohesion) improved measures of child well-being, condition control, and adherence measures. In another example, the systematic review by Hamline and colleagues evaluated hospital to home interventions in 31 studies of children with chronic disease.86 In this review, family engagement interventions, along with care coordination, were associated with a more than 50 percent reduction in hospital readmissions and a 25 percent reduction in emergency room visits following inpatient discharge. The review found that parent education by the engagement strategy of “teach backs” and the use of contingency plans were the most consistently effective in reducing post-discharge utilization.

Figure 11 is a stacked bar chart showing patient and family engagement outcomes assessed for different types of direct patient care interventions, among children and adolescents. Of 14 systematic reviews, six reviews reported chronic disease clinical outcomes, two decisional support outcome, two healthcare utilization, 2 patient satisfaction/experience, and eight quality of life related outcome. No reviews reported medication or self-management adherence and mortality outcome.

Figure 11

Patient and family engagement outcomes assessed for different types of direct patient care interventions, among children and adolescents, as reported in systematic reviews (n=14).

Overall, the 14 systematic reviews of direct patient care engagement strategies in children and adolescents showed positive effects in 3 reviews or potential benefit in 5 reviews. Three reviews showed unclear benefit,83,94,96 one described no benefit,91 and two did not report any findings.85,88 No reviews reported harms associated with patient and family engagement strategies (Figure 12).

Figure 12 is a clustered column chart showing percentage of systematic reviews reporting benefits of different types of direct patient care interventions for improving patient and family engagement, among children and adolescents. The benefit types are positive benefit, potential benefit, unclear benefit, no benefit, and mention of harm. The interventions for each benefit type are self-management and shared decision making.

Figure 12

Percentage of systematic reviews reporting benefits of different types of direct patient care interventions for improving patient and family engagement, among children and adolescents, as reported in systematic reviews (n=14). Unclear benefit = In one (more...)

Table 3 depicts the findings from reviews for specific chronic health condition by type of engagement strategy in children and adolescents. Reviews that focused on studies of patients with diabetes, cardiovascular disease, and respiratory diseases commonly reported benefits with self-management support interventions. Shared decision making interventions were reported to be beneficial among patients with mental health conditions.

Table 3. Number of systematic reviews reporting benefits among children and adolescents, stratified by interventions and conditions.

Table 3

Number of systematic reviews reporting benefits among children and adolescents, stratified by interventions and conditions.

Direct Patient Care Strategies – In Reviews Including Both Adults and Children With Chronic Conditions (Guiding Question 1.a-1.c)

We identified 16 systematic reviews evaluating direct patient care engagement strategies that included children, adolescents, and adults with chronic disease. Overall, this increased the total number of reviews that included studies in pediatric populations to 30. However, given distinctions in eligibility criteria, the 16 systematic reviews presented here were analyzed separately as a “mixed” population of children, adolescents, and adults. Similar to the reviews with only children and adolescents, the most commonly studied conditions were asthma and diabetes mellitus, and the most frequently studied engagement strategies were self-management support and shared decision making. Yet, a smaller percentage of reviews (25%) included family or caregivers in their population of interest compared with those including children and adolescents alone (35.7%).

The 16 systematic reviews that reported on direct patient care engagement strategies in children, adolescents, and adults focused on a total of ten chronic diseases that spanned all age groups (Figure 13). Asthma (6 reviews)97–102 and diabetes (3 reviews)103–105 were the most frequently studied. Four reviews included family members or caregivers,101,105–107 but only the systematic review by Chi and colleagues identified caregivers as their target population.107 The review by Chi and colleagues was also the only systematic review in this group to specifically mention a vulnerable patient population in their results, with 23 percent of the studies focused on patients living in rural settings.107 In addition, two systematic reviews included one study each that centered on vulnerable populations (rural patients or incarcerated patients).103,108

Of the 16 reviews, engagement strategies primarily involved self-management support (13 reviews) and shared decision making (4 reviews).101,102,109,110 One review examined health literacy,111 and one specifically mentioned advanced care planning.110 Four reviews cited multiple engagement strategies.102,104,110,111 Technology was the most frequently cited intervention modality (11 reviews). Nurses or case managers 104,105 and coaching/educational sessions 101,106 were examined in two reviews, each. Shared decision-making reviews primarily looked at coaching/educational sessions, although Winston and colleagues examined the use of video-based decision aids in a review of 488 studies.110 However, most of those studies focused on cancer or cancer screenings in adults, with only 9.5 percent of studies performed in a pediatric population.

Figure 13 is a clustered bar chart showing chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level, among reviews of studies of adults and children combined. The two interventions are self-management support and shared decision making. For each intervention, the eight chronic medical conditions listed are cancer or cancer screening, CVD and hypertension, diabetes mellitus, mental health, mixed chronic conditions, multiple chronic condition, other, and respiratory.

Figure 13

Chronic medical conditions targeted in systematic reviews of different types of interventions for improving patient and family engagement at the direct patient care level, among reviews of studies of adults and children combined (n=16). CVD =cardiovascular (more...)

The 16 systematic reviews of direct patient care engagement strategies in children and adolescents reported on the following engagement outcomes: medication or self-management adherence measures (13 reviews), chronic disease clinical outcomes (11 reviews), quality of life measures (7 reviews), patient satisfaction or experience (5 reviews), decisional support (2 reviews), and healthcare utilization (2 reviews) (Figure 14). As an example of a common engagement strategy for self-management support using technology, a systematic review by Kew and colleagues 100 examined the use of home telemonitoring on asthma symptoms for pediatric and adult patients between clinic visits with feedback by clinicians. The authors looked at 18 RCTs with multiple outcome measures for adherence, clinical outcomes, utilization, and quality of life. Only a small effect size was seen for improvement in quality of life. At least one RCT within the review examined pediatric patients and did not find any difference in control of their asthma between home telemonitoring and controls.

Figure 14 is a stacked bar chart showing patient and family engagement outcomes assessed for different types of direct patient care interventions, among adults and children. The seven outcomes listed are chronic disease clinical outcomes, decisional support outcome, healthcare utilization, medication or self-management adherence, mortality, patient satisfaction/experience, and quality of life.

Figure 14

Patient and family engagement outcomes assessed for different types of direct patient care interventions, among adults and children, as reported in systematic reviews (n=16).

Overall, the 16 systematic reviews of direct patient care engagement strategies in children, adolescents, and adults showed positive effect in 9 reviews or potential benefit in 2 reviews. Five reviews showed unclear benefit.97,100,101,108,112 No reviews reported harms associated with patient and family engagement strategies (Figure 15).

Figure 15 is a clustered column chart showing percentage of systematic reviews reporting benefits of different types of direct care patient interventions for improving patient and family engagement, among adults and children. The benefit types are positive benefit, potential benefit, unclear benefit, no benefit, and mention of harm. The interventions for each benefit type are self-management and shared decision making.

Figure 15

Percentage of systematic reviews reporting benefits of different types of direct care patient interventions for improving patient and family engagement, among adults and children, as reported in systematic reviews (n=16).

Table 4 depicts the findings from reviews for specific chronic health condition by type of engagement strategy in mixed population (children and adults). Reviews that focused on studies of patients with diabetes, cardiovascular disease and respiratory diseases commonly reported benefits with self-management support interventions.

Table 4. Number of systematic reviews reporting benefits among adults and children stratified by interventions and conditions.

Table 4

Number of systematic reviews reporting benefits among adults and children stratified by interventions and conditions.

Implementation of Direct Patient Care Strategies (Guiding Question 1.d-1.f)

Three of the systematic reviews addressed implementation of direct patient care engagement strategies in adults.50,112,113 The systematic review by Scholl and colleagues specifically addressed organizational- and system-level characteristics that influence implementation of shared decision-making strategies.113 Only one study in the review had a comparison group, which was at the pre-intervention phase. The review described six categories of organizational characteristics that promote implementation of engagement strategies: organizational leadership, culture, teamwork, resources, priorities, and workflow.

Of the nine systematic reviews examining the patient portal as a modality for patient and family engagement, two highlighted the implementation process for the portal.50,112 For example, the systematic review by Dendere and colleagues focused on the inpatient portal and identified 22 studies addressing the design and usability testing of the portal and 36 articles addressing process outcomes, such as portal adoption. They reported fewer studies that highlighted the organizational factors (e.g., leadership) that led to portal implementation.50 The systematic review by Kruse and colleagues also highlighted the costs associated with implementation of patient portals for patient engagement and communication.112

In addition to the included systematic reviews, we identified three systematic reviews that reported on implementation outcomes.114–116 Systematic reviews by Anderson and Legare reported on communication (Anderson on end of life communication115, and Legare on shared decision making116). They reported barriers including the payment model, which is linked to the amount of time a provider spends with the patients, as well as six categories of “organizational leadership, culture, teamwork, resources, priorities, and workflows.”113 The systematic review by McBain and colleagues described the effect of self-management support interventions on healthcare utilization in 17 articles among patients with COPD, hypertension, and chronic heart failure, and showed increased outpatient and home visit utilization, as well as a possible decrease in hospital admissions.114

Health System and Organization Strategies – In Patients With Chronic Conditions (Guiding Question 1.a-1.c)

Definition: Health system level strategy is defined 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).

We identified five systematic reviews117–121 and three additional original articles97, 122, 123 that reported on patient and caregiver engagement at the health system level. The articles described specific strategies, facilitators and barriers to implementation,119,120 and the impact of patient engagement on health care delivery and outcomes.117–121

The health system patient and caregiver engagement strategies reported in the five systematic reviews addressed a variety of chronic conditions, most commonly mental health,117,119,121 cancer,119,121 diabetes mellitus,117,119 and neurologic conditions,119,121 as well as priority setting and improvement of care processes that were not disease-specific.117,121 Patient and caregiver engagement strategies most often included patients and family members, but also included representatives of community-based organizations 117 and other community members,121 “consumers,”118 and “well members of the public.”120 Most systematic reviews examined engagement within a variety of health care settings,117–119,121 such as hospitals or outpatient settings, although these settings were often not well described. One systematic review examined patient engagement in health care delivery in ambulatory, emergency department, or inpatient settings in hospitals.120

Patient and caregiver engagement strategies included patient and community advisory councils,117,119–121 service as members of committees, participation in meetings or on project teams,119–121 forums and workshops to provide patients with skills to support engagement,118,119 patients serving as instructors of trainees,118 and patients providing consultative input (e.g., through surveys, focus groups, or interviews).119,120

These systematic reviews provide different lenses through which system level patient and family engagement can be viewed. The review by Sharma and colleagues on the impact of patient advisors121 allowed for a broad range of study designs, including qualitative research and case studies. However, the review also required an assessment of impact for one of three primary outcomes (clinical care, patient safety, or patient satisfaction) or a secondary outcome (including the impact on clinic processes, priorities, physical space, or staff or patients as advisors). This systematic review did not identify any “rigorous, prospective RCTs that assessed our primary outcomes of patient clinical care, patient safety, or patient satisfaction,” but found one cluster RCT in which “patient advisors helped clinics set priorities that were better aligned with the Patient Centered Medical Home and chronic care models.”121 Most of the included studies were case reports and observational studies which primarily described the development of material for patient education or self-management (17 studies), physical space design (15 studies), trainings for staff or trainees developed with patient engagement (10 studies), workflow or service changes (7 studies), and changes in staff awareness of patient perspectives (5 studies). Similarly, in the systematic review by Bombard and colleagues119 which broadly examined patient engagement strategies, the most commonly reported outcomes of patient engagement were care processes or service delivery (35 studies), policy or planning documents (15 studies), and educational materials or tool development (11 studies).

In contrast to the approaches of Sharma and Bombard, the systematic review by Oldfield and colleagues on patient, family, and community advisory councils117 only included studies with a comparator group, and had no limitation on the outcomes evaluated. Studies in this systematic review were categorized by the intent of the patient engagement, whether it was to inform direct care (3 studies), organizational design (3 studies), policymaking (5 studies), or health-related research (5 studies). Oldfield and colleagues similarly identified a “paucity of RCTs or high-quality observational studies.” However, they developed three “guiding principles” based on six studies that compared different aspects of patient engagement: (1) in-person and “collective” engagement is more effective than surveys, phone calls, or individual meetings; (2) patients with leadership roles in the community are more effective participants; and (3) organizational or policy recommendations made with advisory council input required a longer time and greater resources to achieve results (based on 2 studies) and might be of lower quality (based on 1 study).

Implementation of Health System and Organization Strategies – In Patients With Chronic Conditions (Guiding Question 1.d-1.f)

Two of the systematic reviews described implementation measures related to health system or organization-level patient and family engagement strategies.119,120 Both of these systematic reviews included multiple patient and family engagement strategies, although one was limited to care delivered in hospital-based settings.120

Both reviews reported the importance of defining clear roles for patients and training of patients and providers or staff.119,120 These systematic reviews also identified provider skepticism or “negative beliefs and attitudes about patient roles and input” as barriers to successful patient engagement. Similarly, staff, provider, and/or practice awareness, interest, and engagement were significant barriers in a cluster RCT of feedback to primary care providers from patients with significant physical disability or severe mental illness,122 and in a national collaborative study on patient and family collaboration in intensive care units.97

Based on the barriers and facilitators in their systematic review,120 Bombard and colleagues identified distinct techniques to improve patient engagement during different components of the process, including design, patient recruitment, patient involvement, creating a receptive context, and leadership actions. These techniques included ensuring diversity and representation, providing incentives to participation, using flexibility in approaches to patient and family engagement, enacting strategies to “level the playing field and [support] staff in their efforts to be partners,” and demonstrating executive or institutional commitment.120

Neither the identified reviews nor the original studies addressed fidelity in implementation or strategies to specifically support sustainment.

Community/Policy Engagement Strategies

Definition: Community or policy strategy is defined 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 did not find any systematic reviews on community or policy level engagement strategies, but we identified one original article that described community and policy level engagement.124 King and colleagues described a mixed methods evaluation of a longitudinal cohort study to evaluate efforts to strengthen engagement between the Navajo National Community Health Representatives Program and the Navajo Area Indian Health Services that serve the Navajo Nation in three U.S. states. The Community Outreach and Patient Empowerment Program, in partnership with the Navajo Nation, developed a community-health system engagement intervention to improve communication and care coordination between the clinics and the community through its community health workers, with a focus on people living with uncontrolled diabetes. The program included two community advisory councils. Intermediate outcomes suggested that community health representatives perceived greater engagement with clinics through access to the client health information via the electronic health record, care coordination efforts, and direct referrals/communication with providers.124 We did not identify any articles that described implementation of community and policy engagement strategies.

Results From the Gray Literature: Innovative Patient and Family Engagement Strategies Among Patients With Chronic Conditions

Appendix C summarizes the findings from the gray literature search, which we designed to address gaps in our review of published literature, with a particular focus on health care organization/system and community level engagement. Most of the gray literature we found focused on health system strategies that included toolkits for health care systems to facilitate the implementation of patient and family engagement strategies, including patient and family advisory councils (e.g., “Strategically Advancing Patient and Family Advisory Councils in New York State Hospitals”). In addition, we identified several tools for health care providers and systems to use to engage patients and families in conversations with their providers (e.g., “Supporting the Supporters: What Family Caregivers Need to Care for a Loved One with Cancer” from the Institute for Healthcare Improvement).

Guiding Question 2. What gaps exist in the current research?

In this section, we report the gaps in current research by highlighting which engagement strategies had little or no available evidence but had been identified as promising by our experts (Figure 1). In the discussion section, we will comment on the engagement strategies for which additional research is needed, or for which a new systematic review would help to synthesize current knowledge.

Figure 16 provides an evidence map that highlights the overall findings of this systematic review of patient and family engagement strategies. Figure 17 shows map of the evidence on direct patient and family engagement strategies by reported level of benefit for different types of outcomes.

We identified several major gaps. First, relatively few reviews addressed system and community/policy level strategies (5 out of 131 reviews) and even when we augmented the search to identify original studies, only three met our inclusion criteria (i.e., with a comparison group). Second, within these reviews, authors noted the absence of RCTs or high-quality observational studies of health system interventions. Third, most existing studies examined the impact of system level patient and family engagement strategies on care processes or service delivery, policy or planning documents, or educational materials or tool development. As one review noted, “objective clinical outcomes, including quality, safety, and patient satisfaction, should be assessed in order to provide a stronger evidence base for system-level patient engagement.”121 Finally, tools for standardized measurement of patient engagement would facilitate evaluation of implementation success.117 Despite gaps in the evidence around health system strategies, in the gray literature, we identified several toolkits aimed at increasing the uptake of these strategies (Appendix C). Second, regarding the direct patient care strategies, our Key Informants highlighted the importance of advanced care planning, but we identified relatively few (n=4) reviews focused on patient and family engagement strategies for advanced care planning.75,76,81,110 Third, most reviews focused on direct patient care strategies for people living with diabetes (n=45), and fewer studies focused on patients with chronic mental health conditions or multiple chronic conditions, given that 4 in 10 adults have more than 1 chronic health condition.125 The most common chronic health conditions in the U.S. are cancer, diabetes, heart disease, Alzheimer’s disease, chronic lung disease, chronic kidney disease and stroke.125 We identified very few studies in patients with dementia, stroke, or chronic kidney disease. The majority of systematic reviews addressing shared decision making focused on cancer screening and treatment (n=9). Fourth, few (n=13) reviews of direct patient care strategies focused on addressing their effectiveness among vulnerable populations, including urban or rural, minority, low income, or older adults. Fifth, we identified gaps in the systematic reviews reporting on implementation outcomes, health care services utilization, or cost. These outcomes are of high importance to a health system focused on value-based care and measuring cost and hospital re-admissions, but few studies measured implementation or utilization outcomes. Finally, the majority of measured outcomes involved patient surveys to assess satisfaction or HRQOL, but many reviews also addressed chronic disease clinical outcomes, particularly in the area of diabetes management. Fewer reviews addressed caregiver-related measures, even among pediatric studies where many more interventions engaged caregivers and parents of children with chronic health conditions.

Based on our evidence map we identified a need for primary research studies to (1) develop valid and reliable measures for patient engagement, and measures for assessing the patient experience that span the continuum of care rather than assessing separate care episodes; (2) test engagement strategies with roles for family caregivers to advance self-management among both adults and children with chronic conditions; (3) test interventions for engaging patients and families in advanced care planning and end of life care; (4) develop patient portal and other technology tools that are adapted for patients with lower literacy or low technology skills to facilitate communication with medical providers; (5) measure cost-effectiveness of patient and caregiver engagement strategies to support self-management; (6) identify approaches to improve access to care, and ensure effective and quick responses to patients and family caregivers; (7) develop interventions to engage patients with multiple chronic conditions and their family caregivers in self-management of their multiple conditions.

Based on our evidence map we identified a need for more primary research studies in children and adolescents living with chronic disease to focus on (1) effective use of technology to facilitate engagement in self-management; (2) impact of engagement strategies on clinical outcomes as few studies reported clinical outcomes important to patients and families.

Based on our evidence map we identified a need for high quality primary research studies to engage patients and family caregivers at the health system and community level as overall few studies have been published. For example, studies are needed to test approaches to help (1) change medical culture so that patient and family input is prioritized and acted upon; and (2) engage patients and caregivers from diverse backgrounds and vulnerable populations and making their voice more heard within Patient and Family Advisory Councils and other platforms within healthcare organizations.

Finally, our evidence map highlights a need for both systematic review and original studies to examine implementation outcomes related to scaling and implementing direct and health system level engagement strategies. The learning health system needs to understand the fidelity, implementation, cost, and sustainability of engagement strategies.

Figure 16 shows the map of the evidence on patient and family engagement strategies by level of engagement based on conceptual framework described earlier. This figure contains boxes and arrows. Moving from left to right, there are three top boxes describing patient engagement strategies at 3 different levels and the number of systematic reviews included for each level; direct patient care level (126 systematic reviews), healthcare organization and system level (5 systematic reviews and 3 original articles), and community and policy level (0 systematic reviews and 1 original article). Middle box describes the patient populations and the number of reviews found for the most commonly reported conditions and settings. Three arrows coming from top boxes and pointing down towards the lower boxes mentioning potential outcomes related to patient engagement strategies with number of reviews found for each outcome. Included in the boxes are the most common patient-oriented outcomes (Medication and self-management adherence (n=80), chronic disease management outcomes (n=70), quality of life (n=53), and patient experience and satisfaction (n=36)), care giver related outcomes (n=2), Implementation process measures (direct patient care (n=3), healthcare organization and system (n=2)), Healthcare cost (direct patient care (n=6), healthcare organization and system (n=1), community and policy level(n=1)), healthcare utilization (direct patient care (n=25), healthcare organization and system (n=1)), and chronic disease clinical outcomes (healthcare organization and system (n=3)).

Figure 16

Map of the evidence on patient and family engagement strategies by level of engagement. 1 Systematic review included family caregivers. The numbers in the green box (Patient populations) represent reviews.

Figure 17 shows an evidence map that highlights the patient and family engagement strategies by reported level of benefit for different types of outcomes for specific patient populations (shown in bubbles). The bubble size indicates the number of reviews. The outcomes are chronic disease clinical outcomes, decisional support outcome, healthcare utilization, medication or self-management adherence, mortality, patient satisfaction/experience, and quality of life.

Figure 17

Map of the evidence on direct patient and family engagement strategies by reported level of benefit for different types of outcomes.

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