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.
Patients and families are gaining increased access to their personal health information through online patient portals. In addition to obtaining laboratory and radiology results, the trend toward inviting patient and parent access to visit notes (OpenNotes) has enabled millions of patients to read their clinic notes online.1 In pediatric and adolescent care, in which both parents and patients may access the patient portal, sharing information related to reproductive health, substance abuse, genetic data, adoption, or other sensitive issues may pose ethical or legal challenges.2,3 Although parents and patients have always been able to request health records, OpenNotes enables access in an unprecedented scale and in a more timely and efficient manner, bringing questions related to information sharing more acutely into view.
Health information transparency can empower patients and families.1 More than 5 years of data stemming from OpenNotes implementation in various health care settings demonstrate that transparent notes can improve patient engagement and adherence, patient trust and satisfaction, and patient-clinician relationships, leading many health care organizations and clinicians to wrestle with complex decisions and policies about access to pediatric and adolescent patient notes.4,–8 As OpenNotes continues to spread to various specialties and health care professions, now reaching >21 000 000 patients at >120 health care organizations in 47 states,7 we continue to receive inquiries focused on pediatric and adolescent-specific issues. Here, we present several complex instructional cases and offer insights based on our collective experience with pediatric portal governance and OpenNotes over the last 7 years at both an adult and a pediatric organization.1,8,–10 We anticipate that careful consideration of such cases can help elucidate key considerations and inform policies that will support clinicians and enable their patients in the era of transparency.
A 16-year-old adolescent girl with a history of moderate persistent asthma presents to her primary care pediatrician for a scheduled annual appointment, accompanied by her mother. After addressing the patient’s asthma, the pediatrician asks the mother to step out of the room so she can have a confidential discussion with the adolescent patient. The patient discloses that she has recently become sexually active with a male partner and is interested in initiating birth control. She also states that her mother is unaware of her sexual activity and that she prefers this information not to be shared with her parents. The pediatrician discusses birth control options, and she and the patient together decide that an oral contraceptive would be an appropriate choice. The adolescent patient’s mother is invited back into the room, and the visit ends after additional recommendations are made regarding the patient’s asthma management. As they leave, the mother comments that she is looking forward to seeing the note through the patient portal so that she can share the new recommendations for asthma management with her husband and the school nurse.
A 17-year-old adolescent presents for an initial visit to a gastroenterologist with his mother to discuss several months of minor weight loss and gastrointestinal symptoms, including intermittent constipation and diarrhea. The patient reports that his father has inflammatory bowel disease and was diagnosed when he was a teenager. At the end of the visit, the doctor recommends additional testing for inflammatory bowel disease given the family history. While the patient is getting dressed, the mother confides to the doctor that her husband is not the patient’s biological father, but neither her husband nor the patient is aware of this. She also requests that this information be kept confidential because she is not ready to disclose this information to either her son or her husband.
A 15-year-old girl presents with her mother for a follow-up appointment to her primary care pediatrician for weight loss, which the pediatrician has previously diagnosed as a restrictive eating disorder. The patient continues to lose weight. A diet recall reveals an average intake of 1500 kcal per day over the last couple of months. The mother reports that they did not follow-up with a therapist or the restrictive eating disorder program that the pediatrician has referred them to repeatedly over the last 2 months because the mother does not believe that her daughter has an eating disorder. Instead, she insists on a referral to a gastroenterologist. The pediatrician spends a long time reviewing the reasoning for the diagnosis and importance of initiating management in a specialized eating disorders center. The mother continues to insist on seeing a gastroenterologist.
Documentation of Sensitive Information Disclosed by an Adolescent
Case 1 illustrates a common scenario in adolescent offices. In this case, the confidential information pertains to sexual activity, but a similar approach may also apply to an adolescent’s disclosure of alcohol or substance abuse, depression, and the diagnosis or treatment of sexually transmitted disease. Although laws and statutes regarding mature minors vary across states, in general, adolescents have the right to confidentially seek care for most of these things, including contraceptives, without parental consent.2,6,11,12 These visits are considered confidential and may not be disclosed to a parent without the adolescent’s consent.12,13 Most providers will designate such visits, or specific parts of the visit, as confidential and will not disclose confidential information to a parent without the adolescent’s specific consent unless the provider believes that the patient’s behavior may result in risk of harm to herself or others.14 This approach is the same regardless of whether organizations share visit notes on the patient portal.
Occasionally, the adolescent may present to a visit by herself, and the entire focus of the visit involves a confidential matter. These visits tend to be more easily handled because the parent may not even be aware of the visit or have an expectation to see a visit note. The note can then be marked as confidential and, depending on the portal access policies, suppressed from the patient portal altogether or be directed only to the adolescent’s account.
In Case 1, however, the parent will be looking for a note describing the visit. The provider has an obligation to honor the adolescent’s wishes and not disclose information related to her sexual activity. The health care provider in this case may choose to create a single note for the entire visit that is marked as confidential and not posted to the portal at all or is accessible only to the adolescent, depending on organizational policies. Some centers accomplish this through a deactivate proxy access setting, restricting parent access and operated on a note-by-note basis. Alternatively, some systems are working toward the capability of pediatricians to flag confidential information within the note that is then suppressed and does not appear as part of the note in the portal. Finally, clinicians may choose to create 2 notes for this visit (1 public and 1 private), allowing the parent continued access to the general medical information but protecting the confidential information from broad view.
Another consideration is the transfer of medication lists that may include oral contraceptives or other sensitive medications. Even when sensitive notes or parts of notes are suppressed from patient portals, autopopulation of medications into notes that are not suppressed could inadvertently reveal sensitive information. Although some centers may consider hiding or blacklisting sensitive medications, dissociating individual medications from the rest of the list in the electronic record could lead to safety issues. Clinicians should review the documented medication list in the note (as they should with any autopopulated portion of the note, such as physical examinations) to ensure that the new, confidential medications are protected from the parent’s view.
Each solution has inherent strengths and weaknesses. Suppressing the note completely or sharing it with the adolescent only protects the confidential information but also effectively prevents the parent from accessing important medical information about the patient’s asthma and sharing that information with other members of the patient’s care team, such as the school nurse. Parents remain an integral partner in an adolescent’s medical care and decision-making until the patient is able to fully assume responsibility for her own care. As such, limiting access to the parents creates a barrier to that partnership. Suppressing the note may also raise concerns or suspicions for a patient or parent as to why the note has not been made available. On the other hand, flagging confidential information within the note relies on the provider’s utmost attention and consistency (and may be viewed as an additional clinician burden) because forgetting to do so could have significant consequences. The 2-note option may be safer from the perspective of unintended shared information, but it compartmentalizes and fragments the patient’s medical record, potentially making the information more difficult to find and disrupting a cohesive narrative, and it places additional burden on clinicians. Although less vulnerable to access errors, it still requires attention regarding designating the correct note as confidential and clear organizational policies about whether such notes can be accessed by adolescents only or not posted to the portal at all.
Regardless of which approach the clinician chooses, a frank discussion with the adolescent about what will be documented may be critical to ensure the patient’s trust and avoid confusion when the information does not appear on the portal.14 Such a discussion may also offer the opportunity to advance other benefits for the adolescent, such as empowering the adolescent to become more engaged in managing her own health care and strengthening the patient-provider relationship.15 Above all, clinicians must ensure that confidential information is properly protected and ensure that the adolescent’s rights are respected.
Although the challenge of documenting sensitive information existed long before the widespread adoption of portals, OpenNotes brings attention to adolescent rights and privacy into stark relief and requires comprehensive education for clinicians, patients, and parents. Organizations tackling data access policies should consider state laws and statutes that address the rights of the mature minor. They also need a nuanced understanding of the technical capabilities of their electronic health record (EHR) and patient portal in terms of multiple-user accounts, proxy access and possible changes in permissions over time, and the ability to tag or filter confidential information.15 These elements should help inform the specific option organizations adopt for appropriate patient and parent visit notes access. Ideally, both the parent and the adolescent should be able to access general medical information, whereas confidential information remains properly protected.
Practically, however, few EHRs and patient portal vendors provide this level of flexibility. Thus, organizations will need to carefully consider the best option within the technical constraints. Pediatricians may benefit from organizing concerted efforts urging common EHR vendors to build user-friendly solutions for these common problems.16 Because clinicians are often pressed for time, a centralized process to develop policies that consider feasibility and offer succinct best options and steps for clinicians is likely needed, rather than leaving clinicians to sort through options on their own each time they write a note. In all cases, clinicians should have explicit conversations with the adolescent patient and the parents at the outset of care to outline the process of note sharing on the portal and set clear expectations.
Documentation of Sensitive Information Disclosed by a Parent
Case 2 raises different privacy challenges. Parents frequently reveal personal information to the provider with the expectation of confidentiality. Although there are no legal statutes that protect this information from being released to the adolescent or the other parent, most providers would consider themselves ethically bound to protect this information in accordance with the mother’s wishes unless there were concerns that the nondisclosure of the information had the potential of causing harm to the patient.17,18 In some cases, such as a parent revealing allegations of domestic violence, access to the information by the patient’s other legal guardian (and alleged perpetrator) could be harmful to both the parent and the adolescent.
There are at least 2 separate issues here. First, how can this note be properly documented so that the clinically relevant information is accessible to the patient’s care team but not inadvertently divulged to either the father or the adolescent? Second, what happens to this information when the patient reaches maturity? Although there is some guidance around disclosures of incidental discovery of misattributed paternity, such as during genetic testing,19,20 there has been little discussion about whether and how to document paternity information when shared by a parent with the expectation of confidentiality. Documentation of paternity in this case is necessary because treatment recommendations may potentially be modified as a result of this new information. As previously discussed, where and how this information is documented will likely depend on organizational portal access policies. If both the parent and adolescent have access, it would likely be prudent to treat this information as confidential and exclude it from the version of the note that is released to the portal or exclude the entire note from being posted altogether.
When the patient reaches maturity, new issues arise. Most adult patients can obtain their records by formal request. Thus, one could argue that the patient has a right to his full record through the portal and should be privy to all of the information guiding his treatment decisions. On the other hand, some decision-makers may contend that there is an obligation to honor the parental request to keep this information confidential and continue to suppress content shared privately before the patient reached maturity. In other words, new access to information on the portal at maturity may be strictly prospective, with continued suppression of retrospective information deemed confidential when the patient was a minor, which is the approach used at our pediatric health care organization.
Health care institutions need policies to guide clinicians in each situation. When devising policies, they should consider how harmful the disclosure could be, especially if the revelation is first stumbled on through the portal. Ideally, the provider can initiate an ongoing discussion with the mother to arrive at a shared decision about when and how to best share this information with the patient in a sensitive and suitable manner.
Documentation When Parents and Clinicians Disagree
Case 3 illustrates a scenario that is both common and difficult with or without OpenNotes. Pediatricians have always been faced with the challenge of managing parental expectations and health beliefs that may be at odds with a clinician’s own beliefs.21,22 Often, the provider and the parent can come to an agreement or work around conflicting beliefs to ensure that the patient’s medical needs are met. Occasionally, however, parental action (or inaction) could potentially cause harm to the patient. These cases are extremely challenging, and balancing the patient’s immediate needs while preserving a therapeutic alliance with the patient and family is paramount. Providers must carefully consider whether the patient is in immediate danger or if they can continue to work toward a more effective partnership with the parent to achieve a mutually desired outcome. Frequently, additional consultants, including the child protection team, social workers, and even the legal team, may have to be included in the discussions.
In cases such as this, pediatricians often struggle with how best to document the visit in a clinically appropriate fashion without alienating the parent and/or patient and risking further harm to or dissolution of the professional relationship. Similar challenges exist when clinicians suspect medical child abuse23,24 but are not completely certain and seek additional information or when they disagree with parents over less sensitive issues, such as obesity, vaccination, or screen time.21
A first step is to acknowledge that these are particularly difficult situations both from a clinical and documentation perspective, and each must be carefully dealt with on a case-by-case basis. Once again, the advent of patient portals has not altered the complexity of documentation because notes have always been accessible to families who request the medical record. However, portals can make the potential conflict more readily visible.
Clinicians may use the strategy of providing access to a note that clearly reflects the details of the discussion and recommendations made during the visit, objectively describing what was said without judgment or labeling. They may explicitly (and nonemotionally) state that the patient and/or parent and the clinician disagree and work toward next steps that the patient and/or parent and pediatrician can agree on, similar to strategies for the documentation of some mental and behavioral health notes.25 Some may choose to separately document personal thoughts and discussions with consultants who have not directly interacted with the patient in a separate, confidential note. This approach may help provide both a realistic portrayal of the visit itself for the parent and patient while providing a full depiction of the case for other colleagues involved in the care of the patient (although others may argue that this information as well should be accessible to the family). If the child is in imminent danger, the clinician should discuss the case with the appropriate consultants and, if needed, report the case to state agencies. Pediatricians may also face situations when parents disagree between themselves on either the diagnosis or the potential treatment plans. Such scenarios may invoke similar documentation strategies, in which the provider may objectively document the views of both parents and delineate the rationale for the treatment plan that is ultimately decided on. Finally, different team members, including consultants and primary care pediatricians, may also disagree. Here, maintaining a patient-centered focus in documentation can help prevent so-called chart wars, which may not have been as visible to patients before access to portals. Although clinicians may fear exposing patients and families to such conflict, clear documentation of each health care provider’s thought process can put everyone on the same page rather than creating a fragmented and even hostile set of care relationships. It can also help clinicians and families alike to best understand and weigh uncertainty and develop a more thoughtful and nuanced care plan.
The Challenges and Opportunities Ahead
The availability of clinic notes through patient portals affords patients and their families greater transparency and empowerment.1,4,5,26 However, the adoption of such portals among the pediatric and adolescent population has been hampered to some degree by concerns related to ethical and legal challenges specific to this group. Many of these challenges predate patient portals, but the ease of note access offered by patient portals emphasizes the complexities and potentiates pediatricians’ apprehension. Taken collectively, the vast majority of pediatric clinic notes are unaffected by these challenges, and the situations discussed above reflect a minority of visits. However, these edge cases can be high-risk situations that could cause patient harm if not properly addressed by health care providers and organizations. Despite their relative infrequency, they also loom large in clinicians’ resistance to note transparency and prompt health care institutions to debate the merits of taking on this complex task. Leadership and support are needed to offset concerns that rare cases will end up being an untenable time burden. Strong leadership is also central to shepherd the culture change that upholds transparency and patient and/or family engagement with review of evidence to elucidate risks and benefits and guide new research to fill knowledge gaps as the transparency frontier expands.
Some may wonder, “Why bother with such complex efforts?” particularly when resources are constrained. But, excluding pediatric or adolescent patients and their parents from accessing their notes de facto generates a missed opportunity for children and teenagers (and parents) to engage in care and become better informed about their health. It also foregoes an important chance to intentionally guide an adolescent’s transition to adulthood with a focus on becoming an activated and informed patient. Here, pediatricians can play an important role in educating adolescents about the importance of lifelong patient engagement. Similar to debates about mental health patients or elderly adults with caretakers who require proxy access to the patient’s portal, blanket policies that restrict note access for vulnerable populations may further stereotype and marginalize them.25,27 Instead, more granular solutions could potentially empower vulnerable patients and families and lay a thoughtful foundation for future organizational directions in transparent care.
Of the 51 US pediatric and/or adolescent health care organizations participating in OpenNotes that we are aware of,7 23 (45%) report also sharing adolescent notes. In general, organizational policies related to pediatric portal access are age based, serving as a proxy for developmental maturity. For pediatric and adolescent patients, portal access may be shared by multiple users, including parents, guardians, and adolescent patients, and may change over time on the basis of legal statutes that are defined by each individual state.2,28 With few exceptions, parents or guardians generally are allowed access to their dependent children’s health information until the patients reach the age of legal maturity, at which point parental access is discontinued and fully assumed by the now adult patients.29 In situations in which social services obtain guardianship of a patient, parental access may be temporarily suspended or permanently terminated.30 In cases of divorce, both parents will typically retain medical guardianship of patients who are minors and can each retain access to health information. Depending on state laws and institutional policies, adolescents may also gain access to their health information.12 In most states, adolescence is defined as beginning between 12 and 14 years of age, at which point institutions may choose to allow the patients access to the patient portal through a separate account, allowing the patients greater access to their health information in anticipation of transitioning all control and responsibility to the patients by the time they reach the defined age of maturity.28,29
In our review of available online portal policies, most organizations sharing adolescent notes either restrict or remove parental access to the adolescent account or require the adolescent to sign a consent form to allow parents continued access. The latter requires prospective review and places the burden on the adolescent to recognize sensitive health care encounters, remember to change access status, and take action (such as deactivating a parent account), which may pose challenges to family dynamics. At our pediatric hospital, adolescents are offered access to their own unique accounts starting at age 13 years, whereas parents retain their accounts with access to the patients’ nonconfidential medical information until the patients turn 18 years old and access is discontinued.
Pediatric health care organizations offering patient portals must devise access models that encompass the changing access needs of patients and parents over time and formulate policies guiding clinicians about which health information should be released to the portal to preserve confidentiality. Organizations should assemble governance structures that include pediatric and adolescent providers, clinical informaticists, representatives from the general council office (including the compliance and privacy officers), patient relations, and parents and adolescents. Together, these groups must consider state laws, institutional policies, technical constraints, and patient and family needs to guide decisions about the portal as well as the release of specific clinic notes to the portal. Working together with EHR vendors to develop functionality that maximizes flexibility regarding sensitive note content while streamlining workflow and mitigating errors is paramount. Having clear policies, and the rationale for them, will help providers, patients, and parents navigate changes in information transparency. Governance groups should also develop or adapt educational materials (such as patient, parent, and clinician frequently asked questions),31,32 that support all stakeholders and potentiate patient engagement through health information access as health care moves steadily in this direction.
The advent of patient portals signals a culture change and requires education for providers, patients, and families alike. Identifying key accessible champions and advocates may help ease the transition and help providers address the more complex situations they may encounter. Although mounting evidence supports information transparency,1,4,5,8,26,33,34 more research is needed, particularly for adolescent patients and families. As portals reach wider adoption and become the standard of care, the release of clinical notes through portals among the pediatric and adolescent population is no longer a question of if or when but how. It behooves organizations to outline clear policies that include guidance around edge cases similar to those described above to best prepare for expanding health information transparency among providers, patients, and parents.
John D. Lantos, MD, Comments
Like any new medical technology, open-access clinic notes and medical records have both risks and benefits. Furthermore, as is often the case, the new technology is deployed before those risks and benefits are fully understood. Postimplementation data allow for a better understanding of risks and the development of policies, procedures, and regulatory frameworks that allow for the safest possible uses of the new technology. This article is an important first step along that path.
Drs Bourgeois, DesRoches, and Bell contributed to the design of this article, the drafting of the manuscript, and the review of the manuscript; and all authors approved the final manuscript as submitted.
FUNDING: CRICO/Risk Management Foundation of the Harvard Medical Institutions.
We thank Homer Chin, MD, MS, and John Santa, MD, MPH, for their assistance in reviewing the article.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.