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Ethical Challenges Raised by Opennotes for Pediatric and Adolescent Patients Fabienne C

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Ethical Challenges Raised by Opennotes for Pediatric and Adolescent Patients Fabienne C EthicalFabienne C. Bourgeois, ChallengesMD, MPH, a Catherine M. DesRoches, Raised DrPh, b Sigall K. Bell, MDbyb OpenNotes for Pediatric and Adolescentabstract 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 >21000000 US patients, pediatricians continue to query best portal practices. In this Ethics Rounds, we discuss 3 illustrative cases highlighting common pediatric OpenNotes a Division of General Pediatrics, Boston Children’s Hospital, concerns and provide guidance for organizations and clinicians regarding and Department of Pediatrics, Harvard Medical School, Boston, Massachusetts; bDepartment of Medicine, Beth documentation practices and patient portal policies to promote patient Israel Deaconess Medical Center, and Department of engagement and information transparency while upholding patient and Medicine, Harvard Medical School, Boston, Massachusetts parent confidentiality and the patient- and/or parent-provider relationship. Drs Bourgeois, DesRoches, and Bell contributed to the design of this article, the drafting of the manuscript, and the review of the manuscript; Patients and families are gaining than 5 years of data stemming from and all authors approved the final manuscript as submitted. increased access to their personal OpenNotes implementation in various health information through online health care settings demonstrate DOI: https:// doi. org/ 10. 1542/ peds. 2017­ 2745 patient portals. In addition to that transparent notes can improve Accepted for publication Aug 15, 2017 obtaining laboratory and radiology patient engagement and adherence, Address correspondence to Fabienne C. Bourgeois, results, the trend toward inviting patient trust and satisfaction, and MD, MPH, Division of General Pediatrics, Boston patient and parent access to visit Children’s Hospital, 300 Longwood Ave, Boston, patient-clinician relationships, leading MA 02115. E­mail: fabienne.bourgeois@childrens. notes (OpenNotes) has enabled many health care organizations and harvard.edu millions of patients to read their 1 clinicians to wrestle with complex PEDIATRICS (ISSN Numbers: Print, 0031­4005; Online, clinic notes online. In pediatric and decisions– and policies about access 1098­4275). adolescent care, in which both parents to pediatric and adolescent patient Copyright 2018 by the American Academy of and patients may access the patient 4 8 © notes. As OpenNotes continues Pediatrics portal, sharing information related to spread to various specialties FINANCIAL DISCLOSURE: The authors have to reproductive health, substance and health care professions, now indicated they have no financial relationships abuse, genetic data, adoption, or other reaching >21000000 patients at relevant to this article to disclose. sensitive issues may pose ethical or 2, 3 >120 health care organizations in FUNDING: CRICO/Risk Management Foundation of legal challenges. Although parents 7 47 states, we continue to receive the Harvard Medical Institutions. and patients have always been able inquiries focused on pediatric and POTENTIAL CONFLICT OF INTEREST: The authors to request health records, OpenNotes have indicated they have no potential conflicts of enables access in an unprecedented adolescent-specific issues. Here, we interest to disclose. scale and in a more timely and efficient present several complex instructional cases and offer insights based on our manner, bringing questions related to To cite: Bourgeois FC, DesRoches CM, Bell SK. information sharing more acutely into collective experience with pediatric Ethical Challenges Raised by OpenNotes for Pedi­ view. portal governance and OpenNotes– atric and Adolescent Patients. Pediatrics. 2018; 141(6):e20172745 over the last 7 years at both an1, 8 adult10 Health information transparency1 can and a pediatric organization. We empower patients and families. More anticipate that careful consideration Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 141, number 6, June 2018:e20172745 ETHICS ROUNDS of such cases can help elucidate key was a teenager. At the end of the visit, abuse, depression, and the diagnosis considerations and inform policies the doctor recommends additional or treatment of sexually transmitted that will support clinicians and testing for inflammatory bowel disease. Although laws and statutes enable their patients in the era of disease given the family history. regarding mature minors vary across transparency. While the patient is getting dressed, states, in general, adolescents have ’ INSTRUCTIONAL CASES the mother confides to the doctor the right to confidentially seek care that her husband is not the patient s for most of these things, including Case 1 biological father, but neither her contraceptives,2, 6, 11,12 without parental husband nor the patient is aware consent. These visits are of this. She also requests that this considered confidential and may ’ A 16-year-old adolescent girl with information be kept confidential not be disclosed to a parent12, 13without a history of moderate persistent because she is not ready to disclose the adolescent s consent. Most asthma presents to her primary this information to either her son or providers will designate such visits, care pediatrician for a scheduled Caseher husband. 3 or specific parts of the visit, as annual appointment, accompanied confidential and will not disclose ’ ’ by her mother. After addressing the confidential information to a parent patient s asthma, the pediatrician without the adolescent s specific A 15-year-old girl presents with her ’ asks the mother to step out of the mother for a follow-up appointment consent unless the provider believes room so she can have a confidential to her primary care pediatrician for that the patient s behavior may result14 discussion with the adolescent weight loss, which the pediatrician in risk of harm to herself or others. patient. The patient discloses that has previously diagnosed as a This approach is the same regardless she has recently become sexually restrictive eating disorder. The of whether organizations share visit active with a male partner and is patient continues to lose weight. notes on the patient portal. interested in initiating birth control. A diet recall reveals an average Occasionally, the adolescent may She also states that her mother is intake of 1500 kcal per day over the unaware of her sexual activity and present to a visit by herself, and the last couple of months. The mother entire focus of the visit involves a that she prefers this information reports that they did not follow-up not to be shared with her parents. confidential matter. These visits tend with a therapist or the restrictive to be more easily handled because The pediatrician discusses birth eating disorder program that the control options, and she and the the parent may not even be aware pediatrician has referred them to of the visit or have an expectation patient together decide that an repeatedly over the last 2 months oral contraceptive would be an to see a visit note. The note can ’ because the mother does not believe appropriate choice. The adolescent then be marked as confidential and, that her daughter has an eating depending on the portal access patient s mother is invited back disorder. Instead, she insists on into the room, and the visit ends policies, suppressed from the patient ’ a referral to a gastroenterologist. ’ after additional recommendations portal altogether or be directed only The pediatrician spends a long to the adolescent s account. are made regarding the patient s time reviewing the reasoning for asthma management. As they leave, the diagnosis and importance In Case 1, however, the parent will the mother comments that she is be looking for a note describing the of initiating management in a ’ looking forward to seeing the note specialized eating disorders center. visit. The provider has an obligation through the patient portal so that she The mother continues to insist on to honor the adolescent s wishes and can share the new recommendations seeing a gastroenterologist. not disclose information related to for asthma management with her ETHICAL ANALYSIS her sexual activity. The health care Casehusband 2 and the school nurse. provider in this case may choose to Documentation of Sensitive create a single note for the entire Information Disclosed by an visit that is marked as confidential A 17-year-old adolescent presents for Adolescent and not posted to the portal at all or an initial visit to a gastroenterologist is accessible only to the adolescent, with his mother to discuss several depending on organizational policies. months of minor weight loss and Case 1 illustrates a common scenario Some centers accomplish this gastrointestinal symptoms, including in adolescent offices. In this case, the through a deactivate proxy access intermittent constipation and confidential information pertains to setting, restricting parent access ’ diarrhea. The patient reports that
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