Getting on the Same Page: Leveraging an Inpatient Portal to Engage Families of Hospitalized Children

Hospitalized children suffer harm from medical errors at a rate three times that of adults. Children rely on their physicians and parents to exchange information about their care and work together to identify and intercept errors. While sharing honest, unbiased health information with parents is endorsed by the American Academy of Pediatrics as critical to improving pediatric patient safety, hospitalizations present unique challenges for parents to engage. Juggling many challenges and meeting their child’s inpatient physician for the first time, parents can feel overwhelmed with information during rounds and are expected to make quick, informed, high-stakes decisions about their child’s health. As a result, substantial information gaps exist in helping parents understand the full scope of their child’s inpatient care.

To improve information transparency, the American Family Children’s Hospital (AFCH) was the first pediatric center to implement an inpatient portal—a bedside tablet application that gives parents’ real-time access to clinical information from their child’s inpatient health record. During implementation, the research team found that parents wanted the portal expanded to include access to their child’s inpatient physicians’ daily notes, which detail their child’s diagnoses, treatment, contingency, and discharge plans. Studies focused on adults have shown that reading their physicians’ ambulatory office visit notes had improved understanding of their health condition and identified safety concerns, often resulting in changes in care. Whether sharing physicians’ inpatient notes would provide similar benefits for parents during their child's hospitalization is unknown. Extending this work to hospitals, this research study will pilot test BedsideNotes—a new capability within the preexisting inpatient portal to share physicians’ inpatient notes with families at the bedside to engage them in the care of their hospitalized children, partnering with them to prevent harm.

The specific aims of the project are:

• Measure the use, usefulness, and acceptance of BedsideNotes.
• Identify parent and clinician (physician and nurse) experiences with BedsideNotes.

The research team will share physicians’ notes with 40 parents of children under 12 years old hospitalized on hematology/oncology and neonatal intensive care units at AFCH. The team will conduct a mixed-methods approach, including data from electronic health record audit reports, surveys, and interviews to assess parents’ use of and experiences with BedsideNotes. By expanding a commercially available inpatient portal and incorporating feedback from a national advisory group, the Pediatric and Adolescent OpenNotes Learning Collaborative, this research study’s findings will likely generate widespread interest and applicability and have a sustained positive impact on the delivery of patient- and family-centered care. Findings will advance scientific knowledge regarding the potential to harness health information technology for engaging parents as partners to improve the quality and safety of hospital-based care.