Guide to Patient and Family Engagement
Summary and Discussion
Information about engaging patients and family members in health care quality and safety is becoming more available. We gathered information from several sources to obtain a broad and diverse perspective: the literature, both published and grey literature; publicly available tools and materials; and input from key informants as well as our partners who represent patients, families, health professionals, and hospitals.
This scan provides a foundation for the remaining tasks and has helped inform key issues for the content, format, and general structure of the Guide. Below, we briefly summarize what we learned, the main gaps identified in terms of content and appropriateness of materials, and limitations of the scan.
Knowledge Gained from the Process
As noted in our preliminary conceptual framework (Exhibit 1), we sought to understand factors that influence behaviors and actions at an individual and an organizational level that can lead to improved patient and family engagement in quality and safety. In identifying these factors, this scan summarizes major themes around three main categories of information:
- Individual characteristics, perspectives, and needs of the target audiences—patients, families, and health care professionals—with regard to patient and family engagement.
- Organizational context within hospitals, including structures and processes that influence patient and family engagement.
- Hospital-based interventions and materials that are designed to facilitate patient and family engagement, particularly around the topics of safety and quality.
Here we briefly summarize what we learned from the three categories of information.
Individual Characteristics of the Target Audiences: Patients, Family Members, and Providers
Quality and Safety
Both patients and providers tend to think that the quality of care they receive or give is generally good, despite evidence that suggests this is not always true. However, they do not always share the same views of what constitutes quality or safety. Providers tend to focus on the clinical aspects of care, while patients and family members focus on interpersonal interactions.
As with quality, patients and providers can differ in their perspectives on patient safety, and patients may not understand safety as researchers or other experts define it. Patients define patient safety more narrowly in terms of medical errors. In addition, providers may feel that errors are primarily under an individual's control and therefore place less emphasis on the importance of system-level changes.
Conceptually, both patients and providers support patient and family involvement and participation in their own care and recognize that it can lead to better patient experiences and outcomes. Patient and provider support for participation becomes more uncertain when patient engagement includes a higher level of involvement; for example, making diagnosis or treatment decisions.
Most of the literature on patient and family engagement roles focuses on what patients could do (or what researchers and policymakers want patients to do), instead of discussing what behaviors patients and family members currently engage in or would be willing to engage in.
In general, the literature suggests that patients are more likely to engage when the goal relates to obtaining specific information about their care (e.g., asking questions to get information about their condition, treatment, functional activities, or discharge). Patients are less likely to engage when faced with behaviors that seem new or confrontational (e.g., asking providers to wash their hands or mark surgical sites).
Barriers and Facilitators
Barriers to engagement for patients and family members include fear, uncertainty, health literacy, and provider reactions. Facilitators include self-efficacy, information, an invitation to engage, and provider support. For providers, barriers to support patient and family engagement include professional norms and experiences, fear of litigation, and perceived level of effort. Facilitators for providers include those factors discussed in the organizational context section.
We examined potential external and internal motivators for organizations to encourage patient and family engagement in safety and quality. Key external motivators included the desire to imitate competitors, health care legislation or mandated policies, leadership from influential bodies, alignment of financial incentives, public reporting, and accreditation and awards. Key internal motivators included the occurrence of a sentinel event, the business case for patient and family engagement, the desire to improve quality and safety performance, stories from patients and families, and altruism.
Structural aspects of a hospital that influence the ability to initiate and sustain change include the size of the hospital, profit or academic status, and medical staff organization. Unfortunately, although there is general recognition of the potential influence of structural factors on an organization's ability to adopt and sustain innovations, there is insufficient evidence about whether and how these structural factors act specifically as barriers to or facilitators of change.
Processes that affect an organization's ability to implement and sustain change include the organization's understanding of and experience with patient and family engagement, the existing quality and safety culture, the strength of leadership at all levels, the hierarchy (whether rules, regulations, and reporting relationships are emphasized), the existence of slack resources (cushion of resources that can be used in a discretionary manner), absorptive capacity (ability to identify, capture, interpret, share, reframe, and recodify new knowledge, to link it with its own knowledge base, and to put it to appropriate use), and internal alignment (consistency of plans, processes, information, resource decisions, actions, results, and analysis to support key organizational goals and change specific goals).
Organizational strategies to foster change include pre-implementation strategies, such as conducting an initial assessment, developing and fostering a shared vision, developing a clear plan for implementation, obtaining buy-in, providing an infrastructure, aligning internal incentives for participation, and considering sustainability. Strategies during interventions include engaging staff at all levels, engaging an internal champion, communicating consistently throughout the process, using appropriate tools, and collecting data and feedback.
Interventions and Strategies
We found two broad types of strategies or interventions that promoted or facilitated patient and family engagement: hospital-level and individual-level strategies. The two types of interventions are not mutually exclusive. That is, individual-level tools may support hospital-level interventions, and uptake of new individual behaviors may be facilitated by hospital-level support. With either type of strategy, there was a lack of evidence-based information associated with outcomes.
We grouped the hospital-levels strategies into four main categories:
- Health care team. Interventions and strategies used to engage patients and families as members of their health care team include bedside rounds, bedside change of shift reports, patient- or family-activated rapid response teams, specific efforts to encourage family participation, and access to medical record information by patients and family members.
- Facilitating communication. Procedures and policies to assist patients and family members in communicating with providers include understanding which staff members are involved in the patient's care and strategies to guide clinician-patient encounters.
- Increasing patient knowledge, skills, or abilities. Hospital-level strategies to increase patient and family engagement include supporting patients and families in care coordination, establishing systems for patients and family members to track medications and health records post-discharge, communicating with physicians, and providing access to health information.
- Input into management and processes. Strategies for involving patients and family members in management and processes include establishing patient and family advisory councils, introducing other opportunities for patients and families to be involved, and eliciting patient and family feedback.
We reviewed publicly available tools and resources and relevant literature and discussed the tools according to the following components of the Guide:
- Component 1. The majority of tools fell into this component. The main topics addressed were patient safety, communication with providers, patient engagement and activation, care coordination, and infection prevention.
- Component 2. Tools were available to help hospitals implement Patient and Family Advisory Councils and provide other opportunities for engagement at this level. A smaller number of tools provided guidance for patients and family members about assuming these roles.
- Component 3. Most of the tools were targeted at clinicians instead of the broader "health professional" audience. However, the tools did not make distinctions between physicians and nurses. Main topics included communication with patients, infection control, teamwork and communication training, and provider training on implementation strategies.
- Component 4. Most tools related to this component focused on steps or tips for hospitals to promote and support organizational change and included assessment tools.
Across all components, most tools reviewed were paper-based and included brochures, handouts, flyers, posters, checklists, booklets, and handbooks.
Most of the tools reviewed related to Components 1 (active involvement) and 3 (health professionals) and lacked detailed guidance for how to implement them. Overall, more guidance and instructions were available for Component 2 materials.
Overall, our usability assessment indicated that although several tools provide a strong base of information to build on, few can be used "as is" without additional testing or modification.
Overall Strength of Evidence
Reasonably strong evidence is available from related fields, but existing approaches to and resources and tools for patient and family engagement lack a strong evidence base to support their efficacy or effectiveness. Exhibit 15 shows the strength of evidence across the findings sections in this scan. Because patient and family engagement in quality and safety is a newer field, we have drawn on fields with stronger evidence (e.g., systematic reviews of patient-provider communication or shared decisionmaking). Most studies reviewed tended to be single descriptive studies or case studies. Overall, evaluations of implementations lacked a strong design. Similarly, in our review of the tools, little information was available on whether the tools were developed with input from the target audiences or whether they had been evaluated for efficacy, effectiveness, or feasibility.
In addition to identifying literature and tools available to support patient and family engagement, we also sought to identify "gaps between existing tools/materials and those that need to be developed." Specifically, we wanted to identify gaps in subject matter and in the appropriateness (i.e., usability) of materials for the intended target audiences. Below, we summarize our findings with regard to these gaps.
Gaps in Content and Topic Areas
Content gap 1: Strategies are not attuned to patient and family member experiences of hospitalization
One existing gap is the lack of tools that are more equally based on patient and family perspectives and that focus on their priorities during their hospital stay—as opposed to tools that are more reflective of health professional and hospital views and the organization of their work.
We found relatively less research on strategies or opportunities to engage that adequately considered the perspectives of patients and family members. The structure of the strategies tended to coincide with the workflow from the perspective of health professionals and hospitals. The tools and explicit delineation of when patients and families can be involved tend to be built on hospitals' schedules and definitions of patient flow and on hospital staff's scheduled interactions with patients (e.g., bedside rounds), not on how patients might view their own flow or time in the hospitals. One possible exception is patient- and family-activated rapid response teams (Condition H), where the patient and family members, as the experts in the patient's condition, identify when providers need to be called and involved in the patient's care.
Because opportunities are generally defined from these provider perspectives, the initiation of patient and family engagement efforts depend on the opportunities that the hospital makes available (e.g., bedside rounds), instead of allowing patients and families to engage when and how they would prefer.
Content gap 2: There is a lack of individual tools to support system-level strategies
The second gap identified is that many system-level interventions may not have tools at an individual level (for both patients/families and providers) to support their effectiveness.
Our scan has shown that there are important opportunities to engage patients and family members in processes that traditionally have been conducted out of sight (e.g., shift change reporting and handoffs). These "invisible" activities could be made much more visible to patients and families and include their perspective and engagement. However, this would require that such discussion occur in view of families, be organized to ensure their participation, and have supporting materials for both patients/families and providers to partner around these opportunities.
Likewise, there is a lack of individual tools to support patient and family engagement in hospital processes and decisions at an organizational level. Information is more readily available for hospitals on how to establish a Patient and Family Advisory Council from an organizational perspective. There is more limited information for patients and family members about how to develop organizational partnership skills (particularly for those individuals who may not have these abilities naturally but who still want to be involved).
Content gap 3: There is a lack of concrete, actionable support for individual users to engage in behaviors
In evaluating the individual-level tools to support patient and family engagement efforts, we found that the tools often lack concrete actionable support for individual users. We identified general information about patient safety topics, information that patients and families should generally know about the hospital, and many tools for patients and families to communicate with their providers, both generally (e.g., questions to ask about prescribed medications), and specifically (e.g., safety topics like hand washing). However, providing general information or instructing individuals to ask a series of questions in an encounter with providers does not necessarily provide sufficient support to help individuals take action.
Content gap 4: There are few complementary materials
Hospitals and the health professionals who work in them will have an enormous impact on the ability of patients and families to engage in issues related to safety and quality. With the exception of infection control, we found few complementary or paired tools that support the Guide's intended target audiences—patients, family members, and providers. For example, if tools ask patients to adopt a behavior (e.g., asking nurses to wash their hands), there must be accompanying training for nurses because their level of support and reaction will be a facilitator, or conversely a barrier, to the continued adoption of this behavior. Further, if hospital leaders do not ensure organizational supports and alignment of incentives for nurses to be supportive, the intervention will not succeed. Having these complementary materials will help facilitate uptake and sustainment of the intervention.
Content gap 5: More nurse-patient communication materials are needed
Nurses are often on the front line of quality improvement initiatives, and although physician buy-in will be needed to make the initiative successful, nurses may be responsible for much of the work. There seems to be a dearth of tools specifically for nurses on how to better communicate with patients, and vice versa. Several strategies provide opportunities to facilitate communication between nurses and patients (e.g., use of whiteboards, bedside change of shift), but they do not provide the individual-level support for that communication.
Gaps in Usability and Appropriateness of Tools
In cases where the content of the tools was applicable, the usability or appropriateness of the materials was not adequate. We did not find true turn-key options—those materials that could be included in the Guide without additional repackaging, content modification, and testing.
Usability gap 1: Key usability criteria are lacking
As noted earlier, we assessed tools according to a pre-specified set of criteria that represented our "ideals" for tools to be included in the Guide. These criteria included focusing on a hospital setting, reflecting target audience needs and priorities (user-centered), being actionable, having been developed with input from the target audience, and having been evaluated for effectiveness and feasibility in a hospital setting. Often, materials have appropriate content but are difficult to read because of problems with plain language, format, or organization of information. Very few tools for patients and family members have accompanying information to indicate that the development process included input and feedback from the target audience. Without information about the development process, it was difficult to ascertain whether the materials were tested with the target audience to ensure appropriate comprehension.
Usability gap 2: Implementation guidance is limited
There is limited implementation information on the specific tools and strategies used in the patient and family engagement efforts. In particular, most of the tools in Components 1 (active involvement) and 3 (health professionals) lack detailed supporting guidance for how to implement them, including how materials should be distributed or by whom. Key pre-implementation and implementation steps generally are not addressed.
In sum, we have many resources and strategies to pull from, but considerable gaps remain about outcomes associated with those strategies, as well as gaps in tools and materials to be included in the Guide without modification. These gaps will require additional discussion among members of the project team and with AHRQ about which strategies are most desirable to employ, which tools will be most effective, and what organizational supports are needed to have a positive impact on quality, safety, and other important outcomes (e.g., patient satisfaction, patient health outcomes). Implications of these gaps are considered in the next section.
Limitations of the Scan
In conducting the environmental scan, we sought to be comprehensive while simultaneously targeting points of interest for the project. This broad but selective scope means that we have not conducted a full review of all the literature in all relevant areas. For example, in areas with large bodies of evidence (patient-provider communication, shared decisionmaking) we primarily sought to identify review articles. In addition, in at least one area (dissemination), our search terms and strategies did not yield the desired information and highlighted the need to obtain this information in other ways (e.g., in conversations with hospital leaders and engagement advocates).
Similarly, in our review of organizations and Web sites, we may not have identified all publicly available tools that could inform the Guide. Owing to the large numbers of tools identified, we were not able to conduct a full usability assessment on all tools. Further, we continue to receive additional tools and resources from interested parties and from responses to a request for best practices on patient and family engagement from the Joint Commission. We will continue to review these tools and materials and incorporate key concepts and findings in the development of the Guide.