At the end of the NICU discharge education, completed in the patient portal before discharge, families were offered an anonymous survey on OpenNotes. To the authors’ knowledge, this is the first study on NICU families’ perceptions of OpenNotes, which indicated positive interactions with the doctors’ daily progress notes and gave important suggestions for improvement.
Sarabu, Chethan
The Value of OpenNotes for Pediatric Patients, Their Families and Impact on the Patient–Physician Relationship
Although limited by relatively low survey response rate, OpenNotes was well-received by parents of pediatric patients without untoward consequences. The main concerns pediatricians raise about OpenNotes proved to not be issues in the pediatric population. Our results demonstrate clear benefits to adoption of OpenNotes. This provides reassurance that the transition to sharing notes with pediatric patients can be successful and value additive.
OpenNotes: Toward a Participatory Pediatric Health System
OpenNotes’ magic lies within the simple act of empowering patients and their family members to have access to their full medical information so that they can participate in their care (Fig 1). Providing access to clinical documentation in addition to the laboratory test results and reports in a patient portal helps to synthesize information and provide context. The notes are a vital component for multiple caretakers to better keep track of their children’s health care needs and for parents to better coordinate care for their child with medical complexity. Adolescent patients should be invited to participate by having access to their notes, with the necessary privacy controls in place, to prepare and empower them toward the goal of eventually taking full responsibility of their own health care. Pediatric and informatics leaders need to advocate for and work together with electronic health record vendors to help shape patient portals to thoughtfully support OpenNotes for the child and adolescent populations. Ultimately, moving toward a participatory pediatric health system will require more than design, technology, and policy changes; it will require a broader shift in culture.
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