Guide to Patient and Family Engagement
This project will 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):
- Patient and Family Active Involvement Materials.
- Patient and Family Organizational Partnership Materials.
- Health Professional Materials.
- Leadership and Implementation Materials.
The tools to be included in the Guide are intended to support the involvement of patients and family members in 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, and outline the steps needed to implement changes.
This report presents the results of the environmental scan that serves as an evidence-based foundation for the development of the Guide. The goals of environmental scan were 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.
- Incorporate diverse input and perspectives from multiple individuals and organizations representing patients, families, health professionals, and hospitals.
In this report, we first describe the overall conceptual framework of patient and family engagement in hospital quality and safety that informed the literature review and scan. Then, we describe the methods for getting input from experts, reviewing published and unpublished literature, and identifying and reviewing existing tools and resources. Finally, we present our results by main theme and end with discussion and implications for the Guide.
Conceptualization of Patient and Family Engagement
Working Definition of Patient and Family Engagement
Because the Guide is intended to facilitate patient and family engagement in health care safety and quality in a hospital setting, the environmental scan is designed to clarify and refine exactly what we do and do not mean by patient and family engagement. Prior to beginning the environmental scan, we developed a working definition of patient and family engagement. We viewed this definition as fluid in that it not only would influence how we searched the literature, but it also would be informed by the results of our literature search. Our working definition was as follows:
A set of behaviors by patients, family members, and health professionals and a set of organizational policies and procedures that foster both the inclusion of patients and family members as active members of the health care team and collaborative partnerships with providers and provider organizations. For this project, the desired goals of patient and family engagement include improving the quality and safety of health care in a hospital setting.
Based on the results of the literature scan, we will continue to use this definition of patient and family engagement as we move forward.
To enable us to identify and assess the strategies and resources that are most relevant to the development of the Guide, we prepared a preliminary conceptual framework (Exhibit 1) that informed and refined search strategies for literature and resources. The conceptual framework highlights (1) the ultimate goals of improving quality and patient safety through patient and family engagement and (2) the external, organizational, and individual factors that are likely to affect these outcomes. Many different fields of inquiry (e.g., patient- and family-centered care, shared decisionmaking, general behavioral science) provide important concepts, approaches, and theoretical guidance for developing the Guide. Although this project is not tasked with developing an overarching conceptualization for patient and family engagement, the explication of a conceptual framework for how engagement is likely to occur, along with its anticipated outcomes, assisted with the selection and review of appropriate materials for the environmental scan.
The conceptual framework illustrates how hospital-based interventions and complementary resources and materials may influence patients, families, health care professionals, and organizations to engage in specific behaviors that facilitate and support patient and family engagement around safety and quality. The framework also highlights the existing individual, organizational, and environmental contexts in which a Guide to support patient and family engagement will be implemented. The overarching perspective of this project is that any intervention must be consistent with the principles of patient- and family-centered care, as opposed to disease- or clinician-centered care.
An intervention will have an impact on the individual characteristics of patients, families, and health care professionals (such as knowledge, beliefs, attitudes, skills, and self-efficacy); the partnership between providers, patients, and families; and the organizational context within hospitals (including culture, resources, facilitators, and constraints). Ultimately, engaging patients and families in patient safety and quality will likely lead to anticipated outcomes, such as improvements in health care delivery, patient-provider partnerships, care quality, safety, patient and staff satisfaction, and health outcomes. All these elements occur within an external environmental context that includes resources, constraints, and facilitators outside the hospital setting that affect the ability of individuals and organizations to engage. As a hospital-based intervention, the Guide will focus on organizational and individual behaviors that both patients and health care professionals will accept and that are feasible within the hospital setting.
Using this conceptual framework, we identified five main topic areas for further investigation in the environmental scan:
- 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 area for the Guide.
- Best methods for dissemination of the Guide.
As detailed in Exhibit 2, the information in the environmental scan sought to clarify questions in these five categories.