An Ethics Round published in Pediatrics explored the unique ethical and legal concerns regarding privacy for pediatric and adolescent patients. As OpenNotes and similar patient portal systems gain traction, pediatricians examined the optimal way to afford transparency to parents while preserving patient confidentiality for minors.
In the first case, ethicists addressed the documentation of sensitive information disclosed by an adolescent. Laws and statutes generally dictate that adolescents have the right to confidentially seek care as it pertains to sexual activity or substance use; as such, pediatricians should take care to honor the patient’s wishes while recording such information in OpenNote. To avoid accidental disclosure to parents, organizations should flag confidential information with the visit note and take care to dissociate any sensitive prescriptions (ie, birth control) from the public electronic record. In all cases, an “explicit conversation” should be held between adolescent and provider to outline the process of note sharing and “set clear expectations.”
Authors next examined the case of sensitive information disclosed by a parent to the provider, citing a specific case in which the parent shared paternity information not known to the child. Ethicists concluded that documentation of certain information, such as paternity, may be necessary to the medical record to properly provide care. However, ethically speaking, the clinician may feel bound to protect the information, in which case, the information may be withheld from the patient. When the patient reaches maturity, however, new issues may arise in terms of the patient’s right to such sensitive information. Authors concluded that the provider should initiate a conversation with the parent to arrive at a shared conclusion on when and how to share such information in a suitable manner.
The third case illustrated a scenario in which parents and providers disagree, and the steps that may be taken in managing parental expectations when they conflict with the clinician’s beliefs. In these cases, the authors suggested that in documenting the visits clinicians describe the disagreement “without judgement or labeling,” and maintain clear, unemotional records so as to properly delineate all medical options without introducing further conflict. In some cases, however, it may be appropriate for clinicians to keep a separate, confidential note to document discussions with consultants or other practitioners. In either case, ethicists emphasized the importance of “clear documentation” in allowing for the development of a thoughtful, nuanced care plan.
Authors concluded that patient portals such as OpenNotes afford greater “transparency and empowerment” to both families and clinicians, while potentially introducing confidentiality issues. Ethicists concluded that maintaining clear communication between clinician and patient is tantamount to ethical medical practice.
Bourgeois FC, DesRoches CM, Bell SK. Ethical challenges raised by OpenNotes for pediatric and adolescent patients [published online May 18, 2018] Pediatrics. doi: 10.1542/peds.2017-2745