Studies

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.