Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients

Sharing clinic notes with patients and families provides many potential benefits, but it also introduces unique legal and ethical challenges for the pediatric and adolescent population. 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.

[1]  G Sigman,et al.  Confidential health care for adolescents: position paper of the Society for Adolescent Medicine. , 2004, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[2]  M. Lussier,et al.  Therapeutic privilege: between the ethics of lying and the practice of truth , 2010, Journal of Medical Ethics.

[3]  Susan Sawyer,et al.  Recommendations for Electronic Health Record Use for Delivery of Adolescent Health Care , 2022 .

[4]  Tom Delbanco,et al.  A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships , 2016, BMJ Quality & Safety.

[5]  C. Ford,et al.  The HIPAA privacy rule and adolescents: legal questions and clinical challenges. , 2004, Perspectives on sexual and reproductive health.

[6]  Tom Delbanco,et al.  A piece of my mind. Let's show patients their mental health records. , 2014, JAMA.

[7]  Terrill Bravender,et al.  Confidentiality, consent, and caring for the adolescent patient , 2009, Current opinion in pediatrics.

[8]  Fabienne C Bourgeois,et al.  Preserving Patient Privacy and Confidentiality in the Era of Personal Health Records , 2015, Pediatrics.

[9]  Andrea Berger,et al.  Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records , 2016, J. Am. Medical Informatics Assoc..

[10]  P. Young,et al.  Differing perceptions regarding quality of life and inpatient treatment goals for children with severe disabilities. , 2014, Academic pediatrics.

[11]  Bradley H. Crotty,et al.  Connecting Patients and Clinicians: The Anticipated Effects of Open Notes on Patient Safety and Quality of Care. , 2015, Joint Commission journal on quality and patient safety.

[12]  Joann G Elmore,et al.  When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship , 2016, BMJ Quality & Safety.

[13]  Charles Safran,et al.  Information Sharing Preferences of Older Patients and Their Families. , 2015, JAMA internal medicine.

[14]  C. Berkowitz,et al.  Documentation of Child Physical Abuse: How Far Have We Come? , 1998, Pediatrics.

[15]  Laurie D. Smith,et al.  Testing Children for Adult-Onset Genetic Diseases , 2012, Pediatrics.

[16]  Susan S Woods,et al.  Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study , 2013, Journal of medical Internet research.

[17]  P. Rosoff,et al.  The Legal Authority of Mature Minors to Consent to General Medical Treatment , 2013, Pediatrics.

[18]  B. Berkman,et al.  When Should Genome Researchers Disclose Misattributed Parentage? , 2015, The Hastings Center report.

[19]  Tom Delbanco,et al.  Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study , 2015, Journal of medical Internet research.

[20]  L. Jamal,et al.  An old problem in a new age: Revisiting the clinical dilemma of misattributed paternity , 2016, Applied & translational genomics.

[21]  C. Ford,et al.  Adolescents' interpretations of conditional confidentiality assurances. , 2001, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[22]  Joann G Elmore,et al.  Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead , 2011, Annals of Internal Medicine.

[23]  J. Glanz,et al.  A mixed methods study of parental vaccine decision making and parent-provider trust. , 2013, Academic pediatrics.

[24]  C. Christian.  Professional Education in Child Abuse and Neglect , 2008, Pediatrics.