Guide to Patient and Family Engagement
Implications for the Guide
Implication 1. Reflect and Incorporate Target Audiences' Perspectives and Individual and Organizational Contexts
Implementing a Guide for patient and family engagement will often require change—for individuals (patients, families, and health professionals) and organizations. While seemingly a cliché, change can be hard for individuals and organizations, even when they are willing and highly motivated. The actions, behaviors, and roles that our Guide is likely to suggest may be new and challenging and may require support. Although important facilitators exist for patient and family engagement, so do barriers that must be adequately addressed in the conceptualization, focus, development, dissemination, and support for the Guide.
Build On and Reflect Priorities
The materials in the Guide should reflect what is important and most salient to each individual target audience. For instance, patients care about having a good experience; providers care about clinical and financial outcomes; and hospital leaders care about the former but also must address broader financial outcomes.
Link To and Build On Existing External and Internal Motivators
It will be easier for users to adopt the strategies in the Guide if they link the strategies to existing motivators and activities. Take medication safety as an example. At an individual level, the literature suggests that patients feel comfortable asking about a medication's purpose. Tools could build on their existing comfort levels but also encourage them to check the medication's dose and timing. At the hospital level, the Guide should link to existing mandates and efforts, such as HCAHPS.
Implication 2. Provide Tightly Coupled Materials and More Individual Supports for Engagement in Hospital Processes and Decisionmaking
To address the gaps, barriers, and challenges discussed in previous sections, 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 are important and must be considered together. For example, if we develop a tool to help hospitals implement bedside rounds, there must be accompanying information and tools to help patients and families understand and participate in these actions. We will also need supporting materials for health professionals because their support and reaction will be a facilitator, or conversely a barrier, to the continued adoption of this behavior.
Likewise, for strategies to support patient and family partnering in hospital processes and decisionmaking, the Guide should provide information and supports to help patients and families develop the skills they need to participate with hospital staff and management. The Guide should identify the supports patients and families might need to fully participate. This will help ensure that a range of individuals can participate, including those who do might not be sure they have the skills or abilities but could participate with appropriate support.
This "paired" approach will make the process of developing Guide components more efficient and, more importantly, it will provide a much stronger intervention. If hospital leaders do not ensure organizational supports and alignment of incentives for health professionals to be supportive, the intervention will not succeed. Having these matched pairs of 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 is the need to provide guidance for hospitals at different stages in implementing strategies for patient and family engagement in safety and quality issues. We found some hospitals that are considered industry leaders in patient- and family-centered care and engagement. However, others have much less (or even no) experience. In addition, even the top-tier hospitals will need support for implementing and sustaining interventions.
In the same way, there are challenges in asking organizations to adopt strategies that are not currently part of their organizational norms. For instance, with Patient and Family Advisory Councils, patients and family members can participate simply as advisors or they can have input into organizational decisionmaking. Although true engagement may include patients and family members as partners in decisionmaking, not all organizations will feel comfortable allowing this. Creating the council may be a first step; with continued success, later steps could allow patients and family members to have more power at the organizational level. The materials in the Guide will need to balance what hospitals should be doing with the feasibility of and ability to implement the strategies.
Therefore, the Guide must be organized in a way that helps hospitals identify their stage of readiness and access the most appropriate information for those next steps, whether those steps are strategies that are easier or more difficult or strategies that have a smaller or greater impact. The Guide must also include elements that can be implemented for individuals and organizations at different stages. In other words, the Guide should have a sufficient range of tools so that interested and motivated organizations can find something they can implement from the Guide.
Finally, at an individual level, the literature indicates that there are challenges in asking patients to engage in behaviors that feel confrontational (e.g., asking providers to wash their hands). In developing the content of the Guide, we should consider whether to target these behaviors or others that seem less confrontational (e.g., communicating about patients' needs during change of shift). It is possible that if patients and family members are invited into one opportunity (e.g., change of shift), the impact of the intervention may spill over into other areas. However, no matter which strategies are targeted, we will need to ensure that the Guide includes the necessary supports for all parties.
Implication 4. Reflect additional key design principles
The scan and gap analysis highlight core principles that must be followed in the development of the Guide.
Focus on Actions
The Guide must be actionable. Many strategies and opportunities identified for engaging patients and family members in quality and safety simply provide information, which might be necessary for action but is not sufficient. In developing and refining strategies and interventions, the materials in the Guide must focus on actions that can be taken, present clear steps to take those actions, and provide support to do so to ensure that patients and family members are full partners, not just recipients of information or recipients of an intervention.
Include Testing and Evaluation of the Guide and Involve the Target Audiences in Its Development, Testing, and Evaluation
Supporting patient and family engagement in hospital quality and safety is in a nascent stage of development. While this field builds on findings and lessons learned from more substantially developed fields, such as shared decisionmaking and patient-provider communication, relatively less strong, empirical research exists to guide ideal approaches in this area. Existing strategies and approaches to patient and family engagement lack clear evidence; thus, 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 also should supply information and tools to help senior management understand why these strategies are important.
In addition, a key component of the implementation materials must be guidance about why it is important and beneficial to undertake the interventions in the Guide. The supporting materials must clearly identify the benefits to patients, family members, health professionals, and hospitals. These benefits also must be conveyed through the dissemination of the Guide. Although many organizations and individuals have expressed an interest in the Guide, we also cannot assume that people and organizations will value and understand how to use the Guide just because we create it. We must provide the appropriate motivation to make this effort a priority for hospitals.
Implication 6. Assess the Need for Implementation Support
Given how new and challenging this engagement is likely to be for individuals and organizations, we anticipate that technical assistance will be necessary to support patients, families, and organizations to most effectively implement the Guide. In addition, and just as importantly, even though many organizations and individuals may be able to initiate change, it may be difficult for them to sustain the change over the long term. Technical assistance activities can help assess possible challenges in sustaining true patient and family partnering and engagement with hospitals on quality and safety and support long-term progress on these goals.
The need for technical assistance will be an ongoing focus of inquiry with organizations that participate in testing, piloting, evaluation, and dissemination.