Bursting the Information Bubble: Identifying Opportunities for Pediatric Patient-Centered Technology

Although hospital care is carefully documented and that information is electronically available to clinicians, few information systems exist for patients and their families to use while they are in the hospital. Information often appears trapped within the hospital room. In this paper, we present findings from three participatory design sessions that we conducted with former patients, their parents, and clinicians from a large children's hospital. Participants discussed challenges they faced getting information while in the hospital, and then designed possible technological solutions. Participants designed technologies aimed at extending parents' access to and involvement in patients' care. Their designs showed opportunities for health informatics within and beyond the children's hospital room: to allow parents and children to disseminate information from within, access information from the hospital room remotely, establish pervasive and collaborative communication with the clinical care team, and learn about their child's care throughout the hospital stay.