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.
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
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