Special Needs

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Complex and chronic conditions in pediatric patients with special needs often result in large and diverse patient care teams. Having a comprehensive view of the care teams is crucial to achieving effective and efficient care coordination for these vulnerable patients. In this study, we iteratively design and develop two alternative user interfaces (graphical and tabular) of a prototype of a tool for visualizing and managing care teams and conduct a formative assessment of the usability, usefulness, and efficiency of the tool. The median time to task completion for the 21 study participants was less than 7 seconds for 19 out of the 22 usability tasks. While both the prototype formats were well-liked in terms of usability and
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In a previous study, we identified and described information needs of physicians, care coordinators, and parents to support care coordination of CYSHCN and categorized them into information goal types7. One of the goal types we identified was care networking and we defined it as “building a patient’s care team or network, knowing team member identities and roles, and sharing pertinent information to enable activities/actions as a team”. Keeping track of who is involved in a patient’s care at any given time, what their roles are, their goals and feedback, and preferred contact information; and finding new care team members to fit patient and family needs, was described as extremely challenging by the interviewees. Because they lacked appropriate tools, physicians, care coordinators, and parents of CYSHCN resorted to workarounds such as spreadsheets, hand-written sticky notes, refrigerator magnets, and memorization to store and track care team-related critical information.
In spite of the great potential for electronic health records (EHRs) to help providers coordinate care, current EHR systems do not adequately support the needs of care coordination8–10. Vawdrey et al. note that we need better tools to support care team-related information in
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