Guide to Patient and Family Engagement
The information available provides a valuable foundation to begin defining the content and tools to be included in the Guide. However, as the preceding review, gap analysis, 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. To restate previous findings, few, if any, materials meet all criteria:
- Usability, including some previous testing.
- Inclusion of "paired" guidance for patients and families and hospitals and health professionals.
- Inclusion of clear implementation guidance.
The materials that come closest to meeting all criteria are those related to Component 2, the patient and family partnership in health care organization processes and decisionmaking material. However, even here, work remains to further outline support and guidance on an individual level to help people understand how to become involved and to build the skills and self-efficacy they need to participate at this level, and to conduct in-depth testing with end-users.
This, along with our findings and implications, suggests that to be effective in our approach to creating Guide components, we will have to be selective in what we develop and include in the Guide. Some level of testing, development of paired materials, or tailoring and adaptation must occur to complete the Guide Components.
In addition, because of the lack of turn-key materials and the need to make some key decisions about the content and focus of the Guide, 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 timeline for these activities will be outlined in the Task 3 Guide Development Plan. We also expect that subsequent development of materials and testing of preliminary tools will uncover additional facilitators or barriers to engaging patients and family members not revealed by this review. By incorporating input from key stakeholders at multiple points in time, our process for Guide development ensures that the Guide ultimately will meet the needs of end users.
We will continue to work with AHRQ, the Steering Group, and our partners to further refine the structure, content, and format of the Guide.