OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings

Abstract

Objectives

The 21st Century Cures Act included an “OpenNotes” mandate to foster transparent communication among patients, families, and clinicians by offering rapid electronic access to clinical notes. This article seeks to address concerns about increased documentation burden, vulnerability to patient complaints, and other unforeseen consequences of patients having near-real-time access to their records.

Methods

This topical review explores both extant literature, and case examples from the authors’ direct experience, about potential responses/reactions to OpenNotes.

Results

The ethics of disclosing medical information calls for nuanced approaches: Although too little access can undermine a patient’s autonomy and the capacity for truly egalitarian shared decision-making, unfettered access to all medical information has significant potential to harm them. Suggested strategies for mitigating risks in premature disclosure include patient and provider education and “modularizing” sensitive information in notes.

Conclusion

The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.

Introduction

The 21st Century Cures Act aimed to accelerate research and development of innovative treatments and increase access to generic drugs and behavioral healthcare (21st Century Cures Act, 2016). “The Act included an OpenNotes” (ON) mandate, which went into effect on April 5, 2021, to foster transparent communication among patients, families, and clinicians (OpenNotes, 2020). ON permits patients immediate access to signed clinical notes via electronic portal and extends to most assessment, diagnostic, and progress notes (except psychotherapy; see Table I). Clinicians can claim specific exceptions to deny an ON request: to prevent harm, protect privacy, and to protect security of the information, as some examples. Health system exceptions include infeasibility of the request, licensing, information systems limitations, and fee requirements (The Office of the National Coordinator for Health Information Technology, n.d.).

Healthcare professionals’ initial experiences with ON were largely positive (DesRoches et al., 2020), with greater transparency and patient understanding of clinical decision-making as the most frequently cited benefits. Conversely, about one-third of clinicians reported spending more time on their documentation, including changing language that could be perceived as critical of the patient (DesRoches et al., 2020). In this sense, ON has been perceived as more anxiety-provoking than inspiring (Mehan et al., 2021) for providers already feeling stretched by heavy documentation burdens (Moy et al., 2021) and worrying about the downstream cumulative effects of patients having easier access to their records. Bourgeois et al. (2018) advised a clinician–patient discussion prior to reading notes, especially around topics including paternity issues and adoption status; mental health/neurodevelopmental conditions not yet discussed with the parent/patient; and risky sexual behavior and/or substance use.

Patients expect transparency in communications from their healthcare providers and explanations about potentially serious or stressful information (Esch et al., 2016). For patients to be truly empowered and autonomous, they must perceive control of, participate in, and be educated about their healthcare experience (Ouschan et al., 2000). Although making a patient's record available to them promotes autonomy, unfettered access could harm them (or the person for whom they are deciding). A more nuanced approach could consider the degree-of-disclosure required by ON as an intervention that carries its own risks, benefits, burdens, and alternatives.

In Table I, we outline several ethical considerations with ON and apply this ethical framework to relevant case vignettes in pediatric psychology practice.

This case illustrates several clinical and ethical dilemmas, with potential solutions for clinicians.

Timing of Release of Notes

Concerns about enhancing the readability and clinical utility of assessment reports predate the ON era (Baum et al., 2018; Westervelt et al., 2007). Communication of findings historically occurs within the context of a confidential feedback session followed by report dissemination. ON has the potential to create new concerns regarding timing, disclosure, and release of notes directly to patients and families. Premature disclosure may induce gratuitous anxiety, and in Case Vignette 1, it is plausible that the family will lose trust in the psychologist, damaging the therapeutic alliance and potentially undermining the Principle of Beneficence and Nonmaleficence. Conversely, one might be tempted to withhold information until the completed feedback session. However, if delayed feedback leads to delays in care coordination and/or accessing services that rely on the diagnostic formulation (i.e., undermining the Principle of Justice), this strategy may adversely impact shared decision-making and quality of care (Fisher et al., 2009).

One solution is a system alert that the report is in draft and that families will have an opportunity to communicate with the clinician before signing. A principle of “embargo” on notes (Mehan et al., 2021) resonates strongly with how clinicians (including psychologists) prefer to delay disclosure of clinical diagnoses to caregivers until a scheduled feedback session. Another strategy could be clinicians documenting preliminary diagnoses and recommendations so families can initiate seeking interventions without impacting the integrity of the final conceptualization. Finally, it is important for clinicians to educate patients proactively about the risk of accidental premature disclosure—including the process of document authoring, finalization, and access—so that the provider and family are on the same page about documentation of sensitive information.

Who is the “Customer” For the Note?

Clinicians are expected to document for many purposes (clinical decision-making, communication with schools, billing, etc.), which resonates with the Principle of Integrity. Although it is important to identify the environmental and psychosocial contexts that impact children, to adhere to the Principle of Respect for People’s Rights and Dignity, it is equally critical to respect the privacy of family members who are not our patients (e.g., documenting marital discord) and be mindful of what content is appropriate for which “customer” (Soares et al., 2015).

One potential solution is “modularizing” (McCarthy et al., 2018) or “selectively redacting” notes to protect portions of the record from release when deemed clinically prudent. A similar precedent exists in the quality assurance privilege that protects internal self-review records from disclosure (Infante, 1997). In this case, modularization would serve to protect the sensitive family history from release until the clinician could discuss with the family whether they want it in the note. By creating this opportunity to collaboratively and/or proactively redact the note (if desired and/or contextually appropriate), modularization simultaneously promotes the Principles of Respect for People’s Rights and Dignity and Beneficence and Nonmaleficence. However, this process might be laborious and impact clinician productivity (reducing likelihood of adoption), unless efficient ways of modularization are used (smart EHR templates).

Similar to Case 1, we illustrate several clinical and ethical dilemmas and potential solutions.

Pathologizing Versus Strengths-Based Language

Patients are most likely to take offense at clinicians’ notes when they perceive descriptors not only to be critical/judgmental but also irrelevant to the clinical issue at hand (Fernández et al., 2021). In this instance, the family is offended by the implication that they are to blame for their daughter’s eproblem, and the patient is upset about her parents reading her unfiltered remarks about them. Often, describing behaviors rather than labeling them (complementing rather than replacing diagnoses) could both protect against premature diagnostic judgment and lead to more patient engagement (Kahn et al., 2014). Highlighting patient strengths and achievements in notes—and actively probing for these strengths during clinical interview—can defuse perceptions of criticism and provide context for the patient to consider their challenges (Kahn et al., 2014). Including these nuances should consider patients’ health literacy to avoid further confusion or diluting the urgency of recommendations.

Occasionally, patients might find inaccuracies in reports, which they could perceive as deliberately misrepresentative, or be upset by diagnoses mentioned that they do not recall discussing (Fernández et al., 2021). Clinicians may instead choose to temporarily redact or omit the mental health information, especially if their institution lacks the technical ability to protect these elements, which may violate the Principle of Integrity but weighed against the greater harm of disclosure without context. Respectful communication is critical, and while the clinician retains the prerogative to decline to edit their clinical note if the patient/family disagrees with the interpretation or diagnosis, they also have an obligation to correct factual errors brought to their attention. Table II demonstrates examples of mindful documentation.

Who Has Control Over the Note?

ON allows patients sooner access to their note, but they continue to be the gatekeeper of that information to outside parties, like schools and clinicians from other institutions. Apart from the modularization strategy discussed in Case Vignette 1, another could be template letters outlining situation-specific findings and recommendations to families for release to outside entities of their choosing (e.g., only educational recommendations for schools; only recommended treatment modalities for prospective therapists). This vignette also raises an important point over who ultimately has control over the note’s access and release: the adolescent or her parents. State laws regarding minor consent and disclosure of health information to parents vary and often leave disclosure to provider discretion. The immediate disclosure involves Respect for People’s Rights and Dignity. Making autonomous and rational decisions about mental health requires careful consideration of diagnosis and treatment risks, benefits, burdens, and alternatives. The patient and her parents may have a harder time with this, as their decision-making may be anchored by the context-free disclosure of mental health information. This anchoring may lead to the violation of Beneficence and Nonmaleficence. For example, in their frustration with the situation, the parents may insist on a discharge against medical advice, which could be harmful for the patient. From the perspective of informed consent, it is important to prepare both the family and provider to navigate the potential conflict in a healthy way that facilitates the clinical process, rather than in a reactive and potentially damaging way.

Discussion

The Case Vignettes demonstrate the potential ON has to uncover pre-existing but hitherto invisible (to patients/families) communication challenges with providers. Using an ethical framework, clinicians can attempt to mitigate documentation-related risks in the ON era while respecting patient autonomy, strengthening the therapeutic relationship, and balancing transparency (and the opportunity to engender trust and error reduction) with creating undue alarm/anxiety or undermining patient self-esteem.

Clinicians should be trained how to preserve the traditional functions of clinical notes while maximizing the potential benefits of ON (Blease et al., 2020b). Clinicians who are hesitant to share notes due to concerns about negative impact on the patient/family could benefit from realizing that reading the note may reduce anxiety as patients can sometimes have unwarranted negative self-perceptions (Kahn et al., 2014). One recommended pedagogical strategy includes web-based clinician training incorporating an ethical framework to recognize family/patient concerns (Blease et al., 2020a).

We do not anticipate the transition to ON being easy or inexpensive, even with the promise of higher reimbursement rates for diagnostic evaluations and psychotherapy in 2021 (American Psychological Association, 2021). Impacts of documentation changes and clinician training can be elucidated via a Quality Improvement model (Chung et al., 2014), which can track both positive adaptation and increased documentation effort/time burden. Similarly, the value of ON documentation for patients can be explored using Patient Experience surveys and focus groups to engage patient stakeholders in the process (Baker et al., 2016). In addition to clinician education, patients/families would benefit from education on the purpose of clinical documentation, how to utilize ON, and benefits of engaging in dialogue regarding the content and tone of documentation.

The OpenNotes era has potentially increased opportunities for greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, ON has raised new issues, including the need to adapt existing systems and documentation procedures, which in turn arguably allow the field to reflect on self-improvement in the documentation process. We recommend that pediatric psychologists advocate at their institutions and, when necessary, engage a medical ethicist in ascertaining whether ethical principles are being upheld in the care of children and families. The question of whether ON will ultimately prove to be a “bonus or burden” remains an important direction for future inquiry (Office of Johns Hopkins Physicians, 2016).

Authors’ Note

Jason M. Fogler, Division of Developmental Medicine, Boston Children’s Hospital and Departments of Pediatrics and Psychiatry (Psychology), Harvard Medical School, Boston, Massachusetts; Karen Ratliff-Schaub, Developmental Pediatrics, Prisma Health and University of South Carolina School of Medicine Greenville, Greenville, South Carolina; Laura McGuinn, MD, Division of Developmental-Behavioral Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama; Parker Crutchfield, PhD, Medical Ethics, Humanities, and Law, Western Michigan University Homer Stryker M.D. School of Medicine, Kalamazoo, Michigan; Justin Schwartz, MD, Division of Developmental-Behavioral Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama; Neelkamal Soares, MD, Division of Developmental-Behavioral Pediatrics, Western Michigan University Homer Stryker M.D. School of Medicine, Kalamazoo, Michigan.

Conflicts of interest: None declared.

Acknowledgments

The authors would like to thank their colleagues in the Practice Issues Committee of the Society for Developmental & Behavioral Pediatrics and the Writers' Group in the Division of Developmental Medicine at Boston Children's Hospital for their helpful input on earlier drafts.

References