Patients are increasingly engaged in the process of health care, including consumption of their own health data through patient portals and apps. The OpenNotes movement has also popularized the concept of making provider notes available to patients. However, the increase in patient access to their data has been largely restricted to adults in ambulatory settings. Parents/caregivers (PCs) of hospitalized children have unique needs, and their attitudes toward access to health information (HI) about those children are unknown.
PCs of chronically ill children desire increased access to written materials and medical record data, especially in the high-stress inpatient setting. Expansion of portal access and inpatient OpenNotes-like initiatives may be beneficial in this population for quality assurance and patient/family satisfaction.