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

Hospitalized children face three times the rate of medical errors compared to adults. Parents and physicians play a crucial role in exchanging care information and identifying and preventing errors. While sharing unbiased health information with parents is endorsed by the American Academy of Pediatrics, parent engagement during their child’s hospitalizations has unique difficulties. Facing numerous challenges and meeting their child's inpatient physician for the first time, parents can feel overwhelmed during physician rounds and are expected to make quick, informed decisions. Consequently, information gaps exist in parents’ understanding of their children's inpatient care. To address the problem and meet federal regulations, in a prior project, American Family Children’s Hospital (AFCH) implemented an inpatient portal that gives parents real-time access to clinical information from their child’s inpatient health record. During implementation, parents wanted the portal expanded to include access to their child’s inpatient physicians’ daily notes, detailing their child’s diagnoses, treatment, contingency, and discharge plans. Knowing similar initiatives for adults improved understanding and identified safety concerns, AFCH extended this to children, pilot testing Bedside Notes—a new capability within the portal to share physicians’ inpatient notes —to engage families in their child’s care.

The specific aims of the research were as follows:

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

Over a 10-month period, the research team shared all inpatient notes on bedside tablets with 25 parents of children under 12 years old admitted to the oncology unit. The team used mixed methods, including data from electronic health record audit reports, surveys, and interviews, to assess parents’ and clinicians’ use of and experiences with the notes.

Parents accessing Bedside Notes reported improved understanding of their child’s diagnosis and care plan, increased situational awareness, and enhanced communication with the care team. For example, one parent noted: “Being able to look through the notes when we hand off, it helped out immensely. It answered 90 percent of all my questions that I had, and it also helped me formulate questions to ask the doctors when I see them next.” All 25 parents accessed at least one note, with 96 percent accessing multiple notes, representing a 14-fold increase from pre-intervention rates. On average, parents accessed 32 notes. Ninety-two percent were satisfied and understood the notes; 84 percent found them helpful in understanding their child’s admission reason; and 80 percent recalled discharge goals. Of significance, 20 percent of parents noted possible inaccuracies, with 60 percent confirmed as safety issues, emphasizing their potential role as active contributors to patient safety. While recognizing the research’s demonstrated potential for improved parent involvement, comprehension, and communication in pediatric inpatient oncology care, the team stressed the importance of carefully managing medical terminology and addressing potential parental anxiety surrounding access to complex medical data. The team also stressed the importance of balancing note transparency with clinician needs when implementing Bedside Notes, given the challenges clinicians reported such as increased time spent on note-writing and addressing parents’ inquiries. Finally, researchers anticipate that this work will inform leaders, stakeholders, and policymakers in redesigning solutions to enhance patient and family engagement for improved care quality and safety.