RESUMO
Diagnostic radiology reports are increasingly being made available to patients and their family members. However, these reports are not typically comprehensible to lay recipients, impeding effective communication about report findings. In this paper, we present three studies informing the design of a prototype to foster patient-clinician communication about radiology report content. First, analysis of questions posted in online health forums helped us identify patients' information needs. Findings from an elicitation study with seven radiologists provided necessary domain knowledge to guide prototype design. Finally, a clinical field study with 14 pediatric patients, their parents and clinicians, revealed positive responses of each stakeholder when using the prototype to interact with and discuss the patient's current CT or MRI report and allowed us to distill three use cases: co-located communication, preparing for the consultation, and reviewing radiology data. We draw on our findings to discuss design considerations for supporting each of these use cases.
RESUMO
Supporting adolescent patient engagement in care is an important yet underexplored topic in consumer health informatics. Personal Health Records (PHRs) show potential, but designing PHR systems to accommodate both emerging adults and their parents is challenging. We conducted a mixed-methods study with teenage adolescent patients (ages 13-17) with cancer and blood disorders, and their parents, to investigate their experiences with My-Chart, a tethered PHR system. Through analyses of usage logs and independently-conducted surveys and interviews, we found that patients and parents both valued MyChart, but had different views about the role of the PHR for care communication and management, and different attitudes about its impact on the patient's ability to manage care. Specific motivations for using MyChart included patient-parent coordination of care activities, communication around hospital encounters, and support for transitioning to adult care. Finally, some parents had concerns about certain diagnostic test results being made available to their children.