Digital Scarlet Letters: Sexually Transmitted Infections in the Electronic Medical Record

Abstract

The harms of implicit bias in clinical settings are acknowledged but poorly understood and difficult to overcome. We discuss how structural components of electronic medical record (EMR) user interfaces may contribute to sex and gender-based discrimination against patients via constant, duplicative presentation of stigmatizing sexually transmitted infection (STI) data irrespective of clinical significance. Via comparison with symbolism and representative quotes in Hawthorne's 1850 novel The Scarlet Letter, we propose a metaphor to examine how EMRs function as a platform for moral judgment, which may display an indelible “scarlet letter” for pregnant patients with STI history. We consider whether current depictions of STIs in EMRs are structurally unjust and may contribute to biased treatment by directing attention to violations of hegemonic sex/gender norms regarding sexual behavior and thus triggering moral judgments of maternal fitness. We conclude with recommendations for how to address these challenges to improve ethical stewardship of sensitive sexual/reproductive health data.

In Brief

This is an ethical analysis of the documentation of sexually transmitted infection history in pregnancy in the electronic medical record and potential for perpetuating bias through a theoretical comparison to The Scarlet Letter.

DIGITAL SCARLET LETTERS: INTRODUCTION

Well known disparities in maternal mortality and the broader context systemic racism have called attention to the role of implicit bias as a potentiator of adverse outcomes.^1–4 However, implicit bias is a complex “hidden curriculum,” difficult to objectively characterize and therefore change. Presentation of patient data in the electronic medical record (EMR) influences providers' every patient interaction, framing care, and potentially embedding structural injustice. The obstetrics and gynecology setting involves daily interfacing with EMRs, pregnancy, and sexually transmitted infection (STI) care providing unique insight into mechanisms by which bias may emerge from ostensibly sterile medical informatics.

We consider Nathaniel Hawthorne's 1850's novel The Scarlet Letter as a metaphor to reflect upon biased documentation of STI in pregnancy (Fig. 1). The novel's heroine, Hester Prynne, is convicted of adultery and condemned to display a permanent, scarlet “A” on her chest,⁵ Electronic medical records perpetually showcase and frequently emphasize past and present diagnoses, regardless of clinical relevance, context, or viewer role. Our analysis suggests latent sexism in how medical information is maintained and displayed in EMRs (Fig. 2), which may negatively affect health outcomes.⁶ We highlight how design of EMRs may unintentionally violate Health Insurance Portability and Accountability Act's “minimum necessary standard” and negatively impact quality of care.⁷ We consider potential solutions, including informatics interventions to reduce persistence and visibility of stigmatizing information, and broader questions regarding applicability of the “right to be forgotten” in health care.

Figure 1: As in Hawthorne's novel, the combination of sensitive personal information (STI history) with a highly visible, central platform (the EMR dashboard) produces long-lasting stigmatization in patient care.

Figure 2: Automated elements within the EMR with gender-laden stereotypes, such as a flagged result for a woman being not pregnant.

By proposing this hyperbolic, literary metaphor, we aim to invite conversation regarding current practices regarding documentation of STI history. We examine the provider as an EMR user and potential effects on patient care; however, we make no accusation of mal-intent on the part of providers. Rather, we demonstrate the potential for injustice to emerge from culturally insensitive technological infrastructure. Hawthorne's novel details a woman's punishment for adultery in a puritanical society, including scrutiny by her community and lengthy investigation by her jilted ex-husband. Although this metaphor is limited by being grounded in cisgendered female sexuality and Western religious frameworks, it highlights questions relevant to modern medical care of all individuals. We emphasize patient vulnerability under the medical gaze and ultimately call for discretion, for providers and health systems to shield patients from moral scrutiny through stewardship of how and when STI-related data are shared.

THE SCAFFOLD: DRAWING ATTENTION TO A TRANSGRESSIVE PAST

After conviction, Hester Prynne is sentenced to endure 3 hours of public humiliation. A talented seamstress, she emerges from behind the prison door, meeting the crowd awaiting her with a scarlet “A” embroidered across her chest, infant in arms. “The unhappy culprit sustained herself as best a woman might, under the heavy weight of a thousand unrelenting eyes…” In a time when a person's character was intertwined in both moral and legal standing, “…the mildest and the severest acts of public discipline were alike made venerable and awful. Meagre, indeed, and cold, was the sympathy that a transgressor might look for, from such bystanders at the scaffold.”

Like Hester, our patients experience harsh criticism on the EMR “scaffold.” Electronic medical record platforms may vary in their exact presentation or programming of their user interfaces. In our analogy, we use images from EPIC, the largest market share EMR in the United States at present.⁸Figure 3 introduces the EMR central dashboard—the “homepage” for individual records—wherein a quick glance demonstrates prominent repetition of STI diagnoses, specifically emphasizing timing in the third trimester. Like The Scarlet Letter, it is impossible to miss. Although the image was captured in 2021, “chlamydia in third trimester of pregnancy” remains from 2017. Figure 4, from this patients' 2017 delivery summary, demonstrates an autopopulated “active problem list” wherein STI diagnoses are again duplicated, despite having already been treated, with subsequent negative test of cure. Repetitive, unavoidable exposure to stigmatized diagnoses throughout providers' engagement with the patient's record may enact a form of punishment akin to Hester's. Stigmata of repetition may be exaggerated as a by-product of EMR's underlying telos of medical billing, and further quantitative work will be needed to explore differences between repetition of sensitive sexual/reproductive/psychiatric history and other conditions.

Figure 3: Patient's EMR dashboard with repetition of chlamydia infection in pregnancy.

Figure 4: Patient's autopopulated “problem list” from her most recent pregnancy.

Qualitative analysis of history and physical notes for birth admissions demonstrated that prior treated STI may be documented twice as often as relatively significant history (e.g., severe, uncontrolled hypertension).⁹ Electronic medical record scaffolds display past transgressions, digital scarlet letters, in perpetuity, distributing providers' unfettered view of intimate history details across the life span of healthcare engagement, whether in the context of true clinical significance or morbid fascination. Meanwhile, the stigmata of STI and puritanical views of pregnancy and motherhood are physiologically and morally bound by their common predecessor: condomless sex. Concern for infant welfare vis-à-vis perinatal transmission offers the legitimate pretense for medicalization of pregnant bodies and moralization of female sexuality.^10,11

THE INTERVIEW: UNNECESSARY AND STIGMATIZING INFORMATION

Leaving the scaffold, Hester and her infant are returned to their prison cell where they begin to demonstrate physical consequences of their punishment, requiring medical attention: “…there was much need of professional assistance, not merely for Hester herself, but still more urgently for the child—who, drawing its sustenance from the maternal bosom, seemed to have drank in with it all the turmoil, the anguish and despair, which pervaded the mother's system.” The physician, her betrayed husband, concealed their relationship via his new identity of Roger Chillingworth, and begins his “investigation, as he imagined, with the severe and equal integrity of a judge, desirous only of truth, even as if the question involved no more than the air-drawn lines and figures of a geometrical problem, instead of human passions, and wrongs inflicted on himself.”

Clinicians are trained to think objectively and communicate systematically, a process EMRs are designed to support.¹² Although physicians may be as unconsciously biased as the general population, their professional status renders prejudice uniquely harmful.¹³ Like the unspoken connection between Hester and Chillingworth, patient details may affect physicians' behaviors based on their own personal history. Chillingworth repeatedly asks Hester to name the child's father, which she refuses to divulge. Just as revealing her lover's identity could not undo Hester's punishment, patients may be subject to needlessly invasive or repetitive investigations: information for “information's sake.” We, too, may question whether some of the data we seek, document, and duplicate are of similar “dubious or unproven value.”¹⁴ Electronic medical records often include clinically unnecessary details, which may engender stigmatization or objectification, abetted by repetitive structures⁹ and copy-forwarding.^15,16 This highlights the tensions between having information at hand when clinically necessary and the application of “minimum necessary standards”⁷ to prevent inappropriate propagation of sensitive information.

Figure 5 presents an outdated diagnosis of chlamydia in pregnancy and rectal herpes simplex virus juxtaposed with medical consequences: ectopic pregnancy, salpingectomy, and anal fissures, effectively suggesting lasciviousness alongside just deserts. Like Chillingworth, we may not withhold treatment for STIs but eschew stewardship of patients' reputations by denying them a “sinless conscience” (i.e., a “clean” medical record). Clinicians actively engage with the EMR, where STI history may inform current clinical care, for example, frequency of screening, preexposure prophylaxis, and sexual health–modifiable risk counseling. However, STI care should not rely exclusively on EMR evidence of historical risk factors. Patients are disincentivized to disclose stigmatized history and may not fully appreciate their risks. To avoid missing treatable cases, the American College of Obstetrics and Gynecology recently adopted universal hepatitis C screening in pregnancy.¹⁷ Meanwhile, STI care is not the focus during the majority of the time clinically encountering pregnant patients and their EMR.

Figure 5: Juxtaposition of risk factors alluding to “impropriety,” with rectal herpes simplex virus, anal fissures, and salpingectomy in the setting of an ectopic pregnancy.

LASTING STIGMATIZATION: JUDGMENTS ON MATERNAL FITNESS

Hester's daughter, Pearl, grows to be rambunctious, drawing attention from both religious and civil leaders who seek to remove her from her mother's care. Governor Bellingham states, “It is because of the stain which that letter indicates that we would transfer thy child to other hands.” Hester implores Dimmesdale, Pearl's undisclosed father, who suggests that she, a “poor, sinful woman,” was bestowed with the child “to remind her, at every moment, of her fall.”

Language used to discuss STI in pregnancy may imply negative judgment of maternal fitness as a form of gender discrimination.^9,18,19 Through repetitious display of STIs, EMRs present a stereotyped persona of the “bad mother,” with potential downstream harms. Scarlet letters are life sentences. After years of devoted child-rearing, Hester still needed to defend her right to parent in light of the “A” no one could forget. By suggesting unfit motherhood, medical records and physician statements may have significant consequences when used as evidence in punitive welfare actions.²⁰

REMOVING THE LETTER: INTERVENTIONS TO DESTIGMATIZE EMRS

Despite the opportunity to leave, Hester remained bound to the colony for life, haunted by the scaffold. Leaving the colony would not have removed the legacy of the Scarlet A, and could have substantively harmed both Hester and Pearl by removing their home and social supports. Similarly, complete erasure of all STI data from the EMR is not a responsible option for data management, as it may remove information that is clinically significant for some decisions. However, by better controlling the visibility of and access to STI data, it may be possible to undo the digital scarlet letter of STIs throughout the life span of patient care.

Data Sequestration

The concept of data sequestration involves adding friction (e.g., extra clicks with access audits) to reduce the likelihood of viewing sensitive information, and is already being applied in settings such as psychiatry or adolescent medicine.²¹ However, having to “break the glass,” or acknowledge that a clinician is viewing restricted information, does not eliminate bias that may emerge simply from the presentation of a “classified diagnosis.” At the same time, creating a silo of stigmatizing health information, as could also be extrapolated to other conditions such as substance use or mental health, may also further “other” these conditions. This area represents an opportunity for further discussion in contrast to the current automated omnipresence of STIs.

Automatic EMR Maintenance

Just as EMRs can autopopulate information into dashboards or notes,²² informatics technologies can help clean and curate recorded information over time. Copy-forwarding can be automatically detected and potentially cleaned from the record.²³ Technologies for semiautomated curation could facilitate easier maintenance of active problem lists or relevant history in EMRs: for example, entries on the problem list older than a given threshold could be flagged for potential removal. Further advanced technologies could dynamically display information relevant to each clinician who views a record: for example, sensitive STI history could be shown to a physician assessing frequency of STI screening, while not being displayed to a surgeon with minimal clinical interest in sexual health. Developing informatics tools to better manage, maintain, and display sensitive information in EMRs could not only reduce the impact of needless duplication of sensitive data due to copy-forwarding but also maintain both fidelity and equity in information access.¹⁶

Right to Be Forgotten

Implementation of the 21st Century Cures Act, in which patient access to EMR data is being unblocked, is especially relevant,²⁴ as patients may increasingly demand removal of irrelevant stigmata. However, transparency alone is insufficient, as the embeddedness of structural injustice makes it difficult to appreciate how the “truth” may be harmful when thusly presented. Furthermore, patient access to EMR data may be limited to clinical notes and may not include clinician dashboard access, curtailing their ability to assess the impact of a stigmatizing “homepage.” The development of a “right to be forgotten” in data privacy legislation presents a potential template for similar efforts as an essential tool for justice in health care.^25,26 Although outside the scope of this piece, applications of the “right to be forgotten” in health care represent an exciting area for future research.

CONCLUSION

From first to last, in short, Hester Prynne had always this dreadful agony in feeling a human eye upon the token; the spot never grew callous; it seemed, on the contrary, to grow more sensitive with daily torture.

Patients are similarly stuck in healthcare systems that have treated them unjustly. The modern EMR is the intersection of clinical care, research, clinician communication, and patient access. Removing embedded bias within its structure may significantly impact how we understand medicine, and prescribe and converse with patients. Currently, the automated templates and tools within the user interface, built to assist providers by highlighting relevant health information, do not attend to the morally nonneutral feature of STI diagnoses, particularly in pregnancy. To make improvements for all people, especially those with multiple, intersecting identities that make them subject to additional bias, we must adjust the way that data are presented to assist in that exact task: emphasizing clinical utility without encoding bias into care.