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
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
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.
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
Implication 4. Reflect additional key
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
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
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
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.
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