Sharing clinic notes online with patients and parents may yield many potential benefits to patients and providers alike, but the unprecedented transparency and accessibility to notes afforded by patient portals has also raised a number of unique ethical and legal concerns. As the movement toward transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and parent disagreements. With OpenNotes now reaching >21 000 000 US patients, pediatricians continue to query best portal practices. In this Ethics Rounds, we discuss 3 illustrative cases highlighting common pediatric OpenNotes concerns and provide guidance for organizations and clinicians regarding documentation practices and patient portal policies to promote patient engagement and information transparency while upholding patient and parent confidentiality and the patient- and/or parent-provider relationship.
Bourgeois, Fabienne
Empowering informal caregivers with health information: OpenNotes as a safety strategy
Patients frequently depend on informal caregivers (e.g., family, friends, or paid workers) to assist with various aspects of medical care, such as medication administration and travel to medical appointments. OpenNotes seeks to share clinicians’ notes with patients through patient portals. Although patients frequently grant portal access to caregivers, the impact of this improved access to health information on the safety of care provided by caregivers remains unknown. Researchers sent a survey to 24,722 patients participating in OpenNotes who had at least one available visit note during the study period. The surveys were sent through the patient portal. Out of the 7058 surveys returned, 150 respondents self-identified as caregivers. Analysis of survey data revealed that access to patient notes enhanced caregiver understanding of recommended medical care including tests and referrals, reminded them about necessary testing, helped them understand results, reminded them about appointments, and improved caregiver ability to assist patients with medications. An Annual Perspective discussed the potential of health information technology to improve patient and caregiver engagement in safety.
OpenNotes: Sharing visit notes with patients and families
There is growing recognition that patients can participate more actively in their own care when they have access to health information. An international movement, OpenNotes, urges clinicians to share their visit notes with patients and care partners, including parents of pediatric patients. This article summarizes results of a pilot study with approximately 20,000 patients and…
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