The information blocking (IB) prohibition component of the 21st Century CURES Act (21CCA) comes into effect April 5, 2021, which gives patients and their families near instant access to almost all clinical notes, lab results, and health data. … A committee of pediatric gastroenterologists reviewed the 21CCA regulation and compared local practice policies. Pediatric practitioners need to understand how age will affect local information release policies and to know which note types are released, paying special consideration to trainee notes and confidential information. Extraneous detail should be removed from notes, emotional labeling be avoided, and objective statements be made when referring to the care of other providers. Awareness of the 21CCA provides pediatric gastroenterologists with the opportunity to adapt their medical documentation practices to accommodate the new law.
Pediatrics
Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations.
About half of patients and families who perceived a serious mistake in their notes reported it. Identified barriers demonstrate modifiable issues such as establishing clear mechanisms for reporting and more challenging issues such as creating a supportive culture. Respondents offered new ideas for engaging patients and families in improving note accuracy.
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.
Sharing Notes With Adolescents and Young Adults Admitted to an Inpatient Psychiatry Unit
Our data suggest that AYA patients with active behavioral health concerns understand and express general satisfaction with their medical documentation. Overall, reading medical documentation seemed to help a greater proportion of research participants as opposed to hindering or having no effect on inpatient counseling and therapy compliance. These are the first data to demonstrate medical note comprehension and satisfaction among AYA patients in vulnerable clinical settings.
Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care
Our data demonstrate variability in the use of a confidential note type across specialties, patient ages, and types of confidential information. This note type is frequently utilized by a subset of providers who often manage sensitive patient and parent information. As vendors and institutions enable open notes, thoughtful implementation and provider education surrounding the use of this confidential feature is needed.
A patient and family reporting system for perceived ambulatory note mistakes: experience at 3 U.S. healthcare centers
Partnering with patients and families to obtain reports on inaccuracies in visit notes may contribute to safer care. Mechanisms to encourage greater use of patient and family reporting systems are needed.
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.
Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients
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.
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…
Family Perspectives on Whiteboard Use and Recommendations for Improved Practices
Of all families, approximately one-half were not informed about whiteboards and one-third did not use them. Reasons for nonuse were largely modifiable. Parents made aware of their whiteboard by their care teams demonstrated increased likelihood of active whiteboard use, highlighting the importance of education and suggesting a gap in harnessing the full potential of whiteboards as communication tools. Families’ recommendations can help inform whiteboard practices to strengthen communication and care.
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