JMIR Publications

ABSTRACT

Background:

Patient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record – the EHR -- using mobile devices and Web browsers. The Open Notes initiative in the U.S., which became federal law in April 2021, has redrawn and expanded the borders of the medical record. Only a few studies have focused on sharing notes with parents and/or caregivers of pediatric patients.

Objective:

The objective of this study was to investigate the anticipated impact of increasing the flow of EHR information, specifically physicians’ daily inpatient progress notes, via a patient portal to parents during their child’s acute hospital stay – an understudied population, and an understudied setting.

Methods:

Five in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians’ inpatient notes with parents of hospitalized children: Hospital administrators; hospitalist physicians; intern and resident physicians; nurses; and the parents themselves.

Results:

Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all five focus groups. These themes were Communication, Recapitulation/Reinforcement, Education, Stress Reduction, Quality Control and Improving Family-Provider Relationships. Challenges identified included Burden on Provider, Medical Jargon, Communication, Sensitive Content and Decreasing Trust.

Conclusions:

Providing patients and, in the case of pediatrics, caregivers with access to the medical record via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children’s health, but also that they are observers of the clinical processes taking place in the hospital and at their child’s bedside. This includes the clinical documentation process, from creation of the note to reading and sharing of the note.