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. E-mail: 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, 0031-4005; Online, clinic notes online. In pediatric and decisions– and policies about access 1098-4275). 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 parent12,13​ without 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 sexual activity, but a similar approach and operated on a note-by-note his father has inflammatory bowel may also apply to an adolescent s basis. Alternatively, some systems disease and was diagnosed when he disclosure of alcohol or substance are working toward the capability Downloaded from www.aappublications.org/news by guest on October 2, 2021 2 BOURGEOIS et al available. On the other hand, flagging of the mature minor. They also of pediatricians to flag confidential ’ information within the note that is confidential information within need a nuanced understanding of then suppressed and does not appear the note relies on the provider s the technical capabilities of their as part of the note in the portal. utmost attention and consistency electronic health record (EHR) and Finally, clinicians may choose to (and may be viewed as an additional patient portal in terms of multiple- create 2 notes for this visit (1 public clinician burden) because forgetting user accounts, proxy access and and 1 private), allowing the parent to do so could have significant possible changes in permissions over continued access to the general consequences. The 2-note option time, and the ability to tag15 or filter medical information but protecting may be safer from the perspective confidential information. These of unintended shared information, the confidential information from ’ elements should help inform the broad view. but it compartmentalizes and specific option organizations adopt fragments the patient s medical for appropriate patient and parent Another consideration is the record, potentially making the visit notes access. Ideally, both the transfer of medication lists that may information more difficult to find parent and the adolescent should include oral contraceptives or other and disrupting a cohesive narrative, be able to access general medical sensitive medications. Even when and it places additional burden on information, whereas confidential sensitive notes or parts of notes are clinicians. Although less vulnerable information remains properly suppressed from patient portals, to access errors, it still requires protected. autopopulation of medications attention regarding designating into notes that are not suppressed Practically, however, few EHRs and the correct note as confidential and could inadvertently reveal sensitive patient portal vendors provide this clear organizational policies about information. Although some centers level of flexibility. Thus, organizations whether such notes can be accessed may consider hiding or blacklisting will need to carefully consider the by adolescents only or not posted to sensitive medications, dissociating best option within the technical the portal at all. individual medications from the rest constraints. Pediatricians may of the list in the electronic record Regardless of which approach the benefit from organizing concerted could lead to safety issues. Clinicians clinician chooses, a frank discussion efforts urging common EHR vendors should review the documented with the adolescent about what will ’ to build user-friendly solutions16 for medication list in the note (as they be documented may be critical to these common problems. Because should with any autopopulated ensure the patient s trust and avoid clinicians are often pressed for time, portion of the note, such as physical confusion when the information14 a centralized process to develop examinations) to ensure that the does not appear on the portal. ’ policies that consider feasibility new, confidential medications are Such a discussion may also offer and offer succinct best options and protected from the parent s view. the opportunity to advance other steps for clinicians is likely needed, benefits for the adolescent, such rather than leaving clinicians to Each solution has inherent strengths as empowering the adolescent sort through options on their own and weaknesses. Suppressing the to become more engaged in each time they write a note. In all note completely or sharing it with managing her own health care and cases, clinicians should have explicit the adolescent only protects the strengthening the patient-provider conversations with the adolescent confidential information but also 15 relationship. Above all, clinicians patient and the parents at the outset effectively prevents the parent ’ must ensure that confidential of care to outline the process of note from accessing important medical ’ information is properly protected sharing on the portal and set clear information about the patient s ’ and ensure that the adolescent s expectations. asthma and sharing that information Documentation of Sensitive rights are respected. with other members of the patient s Information Disclosed by a Parent care team, such as the school nurse. Although the challenge of ’ Parents remain an integral partner documenting sensitive information in an adolescent s medical care and existed long before the widespread Case 2 raises different privacy decision-making until the patient is adoption of portals, OpenNotes challenges. Parents frequently able to fully assume responsibility for brings attention to adolescent rights reveal personal information to the her own care. As such, limiting access and privacy into stark relief and provider with the expectation of to the parents creates a barrier to requires comprehensive education confidentiality. Although there are that partnership. Suppressing the for clinicians, patients, and parents. no legal statutes that protect this note may also raise concerns or Organizations tackling data access information from being released to suspicions for a patient or parent as policies should consider state laws the adolescent or the other parent, to why the note has not been made and statutes that address the rights most providers would consider Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 141, number 6, June 2018 3 themselves ethically bound to protect On the other hand, some decision- more effective partnership with the ’ this information in accordance with makers may contend that there is parent to achieve a mutually desired the mother s wishes unless there an obligation to honor the parental outcome. Frequently, additional were concerns that the nondisclosure request to keep this information consultants, including the child of the information had the potential17,18​ confidential and continue to suppress protection team, social workers, and of causing harm to the patient. ‍ content shared privately before the even the legal team, may have to be In some cases, such as a parent patient reached maturity. In other included in the discussions. revealing allegations of domestic words, new access to information ’ In cases such as this, pediatricians violence, access to the information on the portal at maturity may be often struggle with how best to by the patient s other legal guardian strictly prospective, with continued document the visit in a clinically (and alleged perpetrator) could be suppression of retrospective appropriate fashion without harmful to both the parent and the information deemed confidential alienating the parent and/or adolescent. when the patient was a minor, which patient and risking further harm to is the approach used at our pediatric There are at least 2 separate issues or dissolution of the professional health care organization. here. First, how can this note be relationship. Similar challenges exist properly documented so that the when clinicians suspect medical child ’ Health care institutions need policies 23,24​ clinically relevant information is to guide clinicians in each situation. abuse ‍ but are not completely accessible to the patient s care team When devising policies, they should certain and seek additional but not inadvertently divulged to consider how harmful the disclosure information or when they disagree either the father or the adolescent? could be, especially if the revelation with parents over less sensitive Second, what happens to this is first stumbled on through the issues, such as 21obesity, vaccination, information when the patient reaches portal. Ideally, the provider can or screen time. maturity? Although there is some initiate an ongoing discussion with A first step is to acknowledge that guidance around disclosures of the mother to arrive at a shared these are particularly difficult incidental discovery of misattributed decision about when and how to situations both from a clinical paternity,19,20​ such as during genetic best share this information with the and documentation perspective, testing,​ ‍ there has been little patient in a sensitive and suitable and each must be carefully dealt discussion about whether and how Documentationmanner. When Parents and with on a case-by-case basis. Once to document paternity information Clinicians Disagree again, the advent of patient portals when shared by a parent with has not altered the complexity of the expectation of confidentiality. documentation because notes have Documentation of paternity in this Case 3 illustrates a scenario that is always been accessible to families case is necessary because treatment both common and difficult with or who request the medical record. recommendations may potentially without OpenNotes. Pediatricians However, portals can make the be modified as a result of this new have always been faced with the potential conflict more readily information. As previously discussed, challenge of managing parental visible. where and how this information is ’ expectations and health beliefs that Clinicians may use the strategy documented will likely depend on may be at odds with a clinician s of providing access to a note that organizational portal access policies. 21,22​ own beliefs. ‍ Often, the clearly reflects the details of the If both the parent and adolescent provider and the parent can come discussion and recommendations have access, it would likely be to an agreement or work around made during the visit, objectively prudent to treat this information as ’ conflicting beliefs to ensure that the describing what was said without confidential and exclude it from the patient s medical needs are met. judgment or labeling. They may version of the note that is released to Occasionally, however, parental explicitly (and nonemotionally) the portal or exclude the entire note action (or inaction) could potentially state that the patient and/or parent from being posted altogether. cause harm to the patient. These and the clinician disagree and work ’ When the patient reaches maturity, cases are extremely challenging, and toward next steps that the patient new issues arise. Most adult patients balancing the patient s immediate and/or parent and pediatrician can can obtain their records by formal needs while preserving a therapeutic agree on, similar to strategies for request. Thus, one could argue that alliance with the patient and family the documentation of some mental25 the patient has a right to his full is paramount. Providers must and behavioral health notes. Some record through the portal and should carefully consider whether the may choose to separately document be privy to all of the information patient is in immediate danger or if personal thoughts and discussions guiding his treatment decisions. they can continue to work toward a with consultants who have not Downloaded from www.aappublications.org/news by guest on October 2, 2021 4 BOURGEOIS et al directly interacted with the patient and adolescent population has engagement. Similar to debates about mental health patients or elderly in a separate, confidential note. been hampered to some degree ’ This approach may help provide by concerns related to ethical and adults with caretakers who require both a realistic portrayal of the visit legal challenges specific to this proxy access to the patient s portal, itself for the parent and patient group. Many of these challenges blanket policies that restrict note while providing a full depiction predate patient portals, but the ease access for vulnerable populations of the case for other colleagues of note access offered by patient may further stereotype and ’ 25,27​ involved in the care of the patient portals emphasizes the complexities marginalize them. ‍ Instead, more (although others may argue that and potentiates pediatricians granular solutions could potentially this information as well should be apprehension. Taken collectively, empower vulnerable patients accessible to the family). If the child the vast majority of pediatric clinic and families and lay a thoughtful is in imminent danger, the clinician notes are unaffected by these foundation for future organizational should discuss the case with the challenges, and the situations directions in transparent care. appropriate consultants and, if discussed above reflect a minority needed, report the case to state of visits. However, these edge cases Of the 51 US pediatric and/or agencies. Pediatricians may also face can be high-risk situations that could adolescent health care organizations situations when parents disagree cause patient harm if not properly participating in OpenNotes7 that between themselves on either the addressed by health care providers we are aware of,​ 23 (45%) report diagnosis or the potential treatment and organizations. Despite their ’ also sharing adolescent notes. In plans. Such scenarios may invoke relative infrequency, they also general, organizational policies similar documentation strategies, in loom large in clinicians resistance related to pediatric portal access which the provider may objectively to note transparency and prompt are age based, serving as a proxy document the views of both parents health care institutions to debate for developmental maturity. For and delineate the rationale for the the merits of taking on this complex pediatric and adolescent patients, treatment plan that is ultimately task. Leadership and support are portal access may be shared by decided on. Finally, different team needed to offset concerns that rare multiple users, including parents, members, including consultants and cases will end up being an untenable guardians, and adolescent patients, primary care pediatricians, may also time burden. Strong leadership is and may change over time on the disagree. Here, maintaining a patient- also central to shepherd the culture basis of legal statutes that2,28​ are defined centered focus in documentation change that upholds transparency by each individual state. ‍ With few can help prevent so-called chart and patient and/or family exceptions, parents or guardians ’ wars, which may not have been as engagement with review of evidence generally are allowed access to visible to patients before access to to elucidate risks and benefits and their dependent children s health portals. Although clinicians may fear guide new research to fill knowledge information until the patients reach exposing patients and families to gaps as the transparency frontier ’ the age of legal maturity, at which such conflict, clear documentation of expands. point parental access is discontinued “ each health care provider s thought and fully assumed by the now adult ” 29 process can put everyone on the Some may wonder, Why bother with patients. In situations in which same page rather than creating a such complex efforts? particularly social services obtain guardianship fragmented and even hostile set of when resources are constrained. But, of a patient, parental access may care relationships. It can also help excluding pediatric or adolescent be temporarily suspended30 or clinicians and families alike to best patients and their parents from permanently terminated. In understand and weigh uncertainty accessing their notes de facto cases of divorce, both parents will and develop a more thoughtful and generates a missed opportunity for typically retain medical guardianship nuanced care plan. children and teenagers (and parents) of patients who are minors and THE CHALLENGES AND OPPORTUNITIES to engage in care and become better can each retain access to health AHEAD informed about their health. It also ’ information. Depending on state laws foregoes an important chance to and institutional policies, adolescents

intentionally guide an adolescent s may also gain12 access to their health The availability of clinic notes transition to adulthood with a information. In most states, through patient portals affords focus on becoming an activated adolescence is defined as beginning patients and their families greater1,4,​ 5,​ 26​ and informed patient. Here, between 12 and 14 years of age, at transparency and empowerment. ‍ ‍ ‍ pediatricians can play an important which point institutions may choose However, the adoption of role in educating adolescents about to allow the patients access to the such portals among the pediatric the importance of lifelong patient patient portal through a separate Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 141, number 6, June 2018 5 account, allowing the patients greater develop functionality that maximizes policies, procedures, and regulatory access to their health information flexibility regarding sensitive frameworks that allow for the safest in anticipation of transitioning all note content while streamlining possible uses of the new technology. control and responsibility to the workflow and mitigating errors is This article is an important first step patients by the time they28, reach29​ the paramount. Having clear policies, along that path. defined age of maturity. ‍ and the rationale for them, will help ACKNOWLEDGMENTS providers, patients, and parents In our review of available online navigate changes in information portal policies, most organizations transparency. Governance groups We thank Homer Chin, MD, MS, sharing adolescent notes either should also develop or adapt and John Santa, MD, MPH, for their restrict or remove parental access educational materials (such as assistance in reviewing the article. to the adolescent account or require patient, parent, and clinician ABBREVIATION the adolescent to sign a consent form 31,32​ frequently asked questions),​ ‍ to allow parents continued access. that support all stakeholders and The latter requires prospective potentiate patient engagement EHR: electronic health record review and places the burden on the through health information access adolescent to recognize sensitive as health care moves steadily in this health care encounters, remember REFERENCES direction. to change access status, and take 1. 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Downloaded from www.aappublications.org/news by guest on October 2, 2021 Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients Fabienne C. Bourgeois, Catherine M. DesRoches and Sigall K. Bell Pediatrics 2018;141; DOI: 10.1542/peds.2017-2745 originally published online May 18, 2018;

The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/141/6/e20172745

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