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 using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients.
Objective: This study aimed to investigate the anticipated impact of increasing the flow of electronic health record 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: A total of 5 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, interns and resident physicians, nurses, and the parents themselves.
Results: Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and 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 medical records 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 the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians' workflow but also their collaboration with providers as part of the health care team.
Keywords: caregivers; electronic health records; focus group; hospitals; information sharing; inpatient care; medical informatics; patient portals; pediatrics.
©Catherine Arnott Smith, Michelle M Kelly. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 30.05.2022.