Guide to Patient and Family Engagement
This goal of this project is to promote patient and family engagement in hospital settings by developing, implementing, and evaluating the Guide to Patient and Family Engagement: Enhancing the Quality and Safety of Hospital Care (hereafter referred to as the Guide). The Guide will comprise tools, materials, and/or training for patients, family members, health professionals (e.g., hospital clinicians, staff), hospital leaders, and those who will implement the materials in the Guide. Our preliminary vision of the Guide included four components, each with a series of "tools" (e.g., materials, resources, items for training): (1) Patient and Family Active Involvement Materials; (2) Patient and Family Organizational Partnership Materials; (3) Health Professional Materials; and (4) Leadership and Implementation Materials. The tools in the Guide are intended to:
- Support the involvement of patients and family members in the safety and quality of their care.
- Encourage the involvement of patients and family members in improving quality and safety within the hospital setting.
- Facilitate the creation of partnerships between health professionals and patients/family members.
- Outline the steps needed to implement changes.
Purpose and Methods
This report presents the results of the environmental scan that serves as an evidence-based foundation for the development of the Guide. In conducting this environmental scan, our intent was to: be comprehensive while targeting topics and questions that are directly relevant to the goals of the project; reflect the concepts of consumer engagement and patient- and family-centered care around the issues of patient safety and quality in the hospital setting; and incorporate diverse input and perspectives from multiple individuals and organizations representing patients, families, health professionals, and hospitals.
We developed a working definition of patient and family engagement and a guiding framework to organize and inform our search. From the framework, we identified five main topic areas for further investigation:
- 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 culture, and its influence on 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.
- Specific content areas for the Guide.
- Best methods for dissemination of the Guide.
The environmental scan was conducted from November 2009 to February 2010 and gathered information through internal team input, key informant interviews, and a review of the peer-reviewed and grey literature, as well as by identifying and assessing relevant tools and interventions. The team scanned the medical and social science peer-reviewed literature—including both descriptive qualitative and quantitative studies—using PubMed, PsycInfo, CINAHL, and the Cochrane databases. To scan the grey literature, we gathered documents from the Agency for Healthcare Research and Quality (AHRQ), the project team, and external experts during the key informant interviews. In addition, we conducted a more targeted search of 110 Web sites recommended by our partners for non-peer-reviewed literature and potential tools. In total, 238 peer-reviewed and grey literature articles were reviewed and abstracted; we also assessed the content of 330 tools and assessed the usability of approximately 80 tools.
We have grouped our findings according to the main categories identified in the preliminary conceptual framework:
- 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 these three categories of information.
Individual Characteristics of the Target Audiences
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.
Engagement. 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 during clinical encounters.
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 patient and family members include fear, uncertainty, low health literacy, and provider reactions. Facilitators include self-efficacy, information, invitations 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.
Motivation. We examined potential external and internal motivators for organizations to encourage patient and family engagement in safety and quality. Key external motivators include 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.
Organizational structure. 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. 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.
Organizational processes. A number of processes affect an organization's ability to implement and sustain change. These 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 and/or change key organizational goals).
Implementation strategies. Organizational strategies to foster change within the hospital setting include pre-implementation strategies such as conducting an initial assessment of the proposed change, 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 from the beginning. 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. Hospital-level interventionsa are implemented by means of changes in hospital policies, processes, systems, procedures, or structures. Individual-level interventions are designed to change individual knowledge, attitudes, or skills by means of tools for educating, informing, activating, and engaging individuals. 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.
Hospital-level strategies. We grouped the hospital-level 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 within the hospital include establishing patient and family advisory councils, introducing other opportunities for patients and families to be involved, and eliciting patient and family feedback.
Individual-level strategies. We reviewed publicly available tools, resources, and relevant literature. We discuss the tools according to the following components of the Guide:
- Component 1 (Patient and family active involvement). 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 (Organizational partnership). 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 (Health care professional). 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 (Hospital leadership and implementation). Most tools related to this component focused on steps or tips for hospitals to promote and support organizational change and included assessment tools.
Format. Across all components, most tools reviewed were paper-based and included brochures, handouts, flyers, posters, checklists, booklets, and handbooks.
Implementation guidance. Most of the tools reviewed related to Component 1 (patient and family active involvement) and Component 3 (health care professional) but lacked detailed supporting guidance for how to implement them. Overall, more guidance and instructions were available for Component 2 (organizational partnership) materials.
Usability. 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 evidence of efficacy or effectiveness. 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 strong designs. Similarly, in our review of the tools, little information was available on whether the tools had been 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, the environmental scan sought to identify gaps in subject matter (i.e., content) and in the appropriateness (i.e., usability) of materials for the intended target audiences.
Gaps in Content and Topic Areas
- Content gap 1: Strategies are not attuned to patient and family member experience of hospitalization. One existing gap is the lack of tools that are based more equally on patient and family perspectives and that focus on the priorities of patients and families during hospital stays—as opposed to tools that are more reflective of health professional and hospital views and organization of their work.
- Content gap 2: Lack of individual tools to support hospital-level strategies. Many hospital-level interventions may not have tools at an individual level (for both patients/families and providers) to support their effectiveness.
- Content gap 3: 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: 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—around the same topics and issues. Having complementary materials will help facilitate uptake and sustainment of the intervention.
- Content gap 5: Nurse-patient communication materials. 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.
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: Lack of key usability criteria. We assessed tools according to a pre-specified set of criteria that represented our "ideals" for tools to be included in the Guide. Often, materials had appropriate content but were 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 have been tested with the target audience to ensure appropriate comprehension.
- Usability gap 2: Implementation guidance. 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 implementation guidance for how to implement them, including how materials should be distributed or by whom. Key pre-implementation and implementation steps are generally 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 that can be included in the Guide without modification.
Implications for the Guide
Implications that must be considered during development of the Guide include:
- Implication 1. Reflect an understanding of and incorporate target audiences' perspectives and individual and organization contexts. Implementing a Guide for patient and family engagement often will require change—for individuals (patients, families, and health professionals) and organizations. To help facilitate change, the materials in the Guide should reflect what is important and most salient to each individual target audience and link the strategies to existing motivators and activities.
- Implication 2. Provide tightly coupled materials and more individual support for engagement in hospital processes and decisionmaking. To address the gaps, barriers, and challenges discussed here, the Guide should be organized so that it pairs support for individual- and hospital-level strategies around the same concepts. The 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. All three entities (hospitals, patients and families, and health care professionals) are important and should be considered together. The Guide should include complementary materials for patients and families, health care professionals, and hospital leadership to ensure that a range of individuals can participate. Having "paired" materials will help facilitate uptake and sustainment of the intervention.
- Implication 3. Be accessible to individuals and organizations at different stages of willingness, readiness, and confidence to support patient and family engagement. Another consideration for the Guide is the need to provide guidance for hospitals at different stages in implementing strategies for patient and family engagement in safety and quality issues. Therefore, the Guide must be organized in a way that helps hospitals identify their stage of readiness and access the most appropriate information for their next steps, whether those steps are strategies that are easier or more difficult or have a smaller or greater impact.
- Implication 4. Reflect additional key design principles. The scan highlights core principles that must be followed in the development of the Guide. The materials in the Guide must focus on actions that can be taken and provide support to ensure those actions. Also, because many of the existing strategies and approaches to patient and family engagement lack clear evidence, we must rely on our own testing, piloting, and evaluation to provide this evidence.
- Implication 5. Provide strong implementation guidance. Although there was limited implementation information on the specific tools and strategies used in the patient and family engagement efforts, the literature on organizational context specifies key pre-implementation and implementation steps during quality improvement activities. The Guide will need to provide guidance on these key activities for each potential strategy to support hospital implementation. It will also need to supply information and tools to help senior [nursing] management understand why these strategies are important.
- Implication 6. Assess the need for implementation assistance. Given how new and challenging this engagement is likely to be for individuals and organizations, we anticipate that technical assistance may be an important factor in supporting patients, families, and organizations and the individuals in them to most effectively implement the Guide. The needs for technical assistance will be an ongoing focus of inquiry with organizations who participate in testing, piloting, evaluation, and dissemination.
Available information provides a valuable foundation to begin defining the content and tools for inclusion in the Guide. However, as the preceding review and implications suggest, important decisions about the focus, content, and approach of the Guide remain. Although there is much to build on, there are no turn-key solutions to rely on. Because of this, we anticipate the need for a longer, iterative process to define the final elements of the Guide and the key activities necessary to complete initial drafts for testing. The Task 3 Guide Development Plan will build on the information gathered in this scan and will discuss in more detail how to operationalize the implications discussed in this section. We will continue to collaborate with AHRQ, the Steering Group, and our partners to further refine the structure, content, and format of the Guide.
a. We use the term "hospital level" interventions with the understanding that hospital level could imply hospital systems as well as individual hospitals.