Do electronic medical records contribute to stigma associated with sexually transmitted infections?

In this issue of Sexually Transmitted Diseases, Dr. Bennett and colleagues¹ present a thoughtful and insightful ethical analysis of how medical clinicians document sexually transmitted infection (STI) history in electronic medical record systems (EMRs). In their article, they utilize Hawthorne’s The Scarlet Letter as a metaphor for the ways in which EMRs can be used to label people with a prior STI in a repetitive, longitudinal, and persistent manner that is unnecessary and harmful. Regardless of intention, EMRs can create “a platform for moral judgement which may display an indelible ‘scarlet letter’” for people with a history of STIs which is “structurally unjust and may lead to biased treatment by directing attention to violations of hegemonic sex/gender norms regarding sexual behavior and thus triggering moral judgments of maternal fitness.”¹ The authors’ focus is on maternal health from a cis-gender, heterosexual perspective which makes sense given the themes of male-female relationships and motherhood that are so prominent in the novel. At the same time, stigma related to STIs among many populations^2,3 make this issue relevant to a much larger group—anyone who has had an STI in the past.

Sexual health and STIs are complex and often stigmatized topics due to longstanding cultural and religious factors. Stigma around infections related to sex dates back thousands of years. While this stigma has some roots in avoiding transmission and avoiding physical discomfort and health complications related to STIs, the ways in which women have been shamed and blamed for STIs by male partners, cultural and religious leaders, and policy makers is well documented.⁴ Dr. Bennett and colleagues suggest that EMRs contribute to sex and gender-based discrimination via drawing attention to a “transgressive past” that is unnecessary and triggers unconscious bias in clinicians that leads to negative judgements of patients. It follows that EMRs should be modified to prevent these problems, by making STI-related data less visible or removing it all together. Below, we address these considerations, and provide some additional thoughts on how best to address sexual health in clinical settings including EMRs.

The authors suggest EMRs “contribute to sex and gender-based discrimination against patients.” Hester is forced to wear an embroidered and scarlet “A” on her chest and placed on a literal platform for the purpose of public humiliation, and patients are placed on an EMR “scaffold” when STI results are repeated and highlighted for all clinicians to see. In the context of clinical care, the authors state EMRs provide constant, duplicative presentation of stigmatizing STI history irrespective of clinical significance, resulting in the unnecessary and harmful display of past “transgressions.” One simple sounding and low-maintenance solution they offer is adding “friction” to the EMR around STI-related data. This may mean increasing the number of clicks or adding a pop-up message to make it more difficult to access STI results, similar to “breaking the glass” to access other sensitive information. This approach would reduce visibility of STI results, but also leads to many questions. How many clicks will be required to access STI history? Will adding friction lead to unintended consequences such as missed opportunities for STI screening or repeat testing? Rates of STI screening are unacceptably low across the United States, and STI rates are increasing—including a 279% increase in congenital syphilis between 2015 to 2019.^5,6 We must weigh the risks and benefits as we consider how to change how clinicians see and react to STI-related information in EMRs.

Importantly, STI history may be pertinent for influencing clinical decision making in a given clinical situation. Prior studies have demonstrated prior STI history as a risk factor for future STIs. For example, in a large cohort of adolescents (n=75,273), compared to those reporting no STI’s in adolescence, those with STIs had 2.6 (females) and 2.3 (males) times increased risk for subsequent HIV infection.⁷ This rate was more than three times increased in those with multiple infections. Among pregnant women with syphilis in the United States, the most common risk factor was a history of an STI (43%) followed by multiple partners (30%).⁹ The number of syphilis cases in this group has increased by 61% between 2012 and 2016. Because a person with a previous STI diagnosis is at higher risk of a subsequent diagnosis, a clinician who is not aware of this history may not make an appropriate clinical decision about STI testing or treatment, which can lead to missed diagnoses and subsequent complications, such as congenital syphilis or pelvic inflammatory disease-related infertility.

Another solution offered by Bennett and colleagues is automatic EMR maintenance or “curation,” such as copy-forward detection and deletion or flagging old information with removal prompts. Limiting certain STI-related information makes sense when it will not change care. However, it is difficult to anticipate this for every patient situation. A related solution offered is to design EMRs to “dynamically display information relevant to each clinician” where the example is given of sexual health information would be visible for primary care and emergency medicine clinicians, but not surgeons. However, again, proactively determining which situations and which clinicians to select or not select based on relevance seems challenging and impractical.

Finally, the authors suggest that some STI-related information should perhaps be “forgotten” or removed from the EMR altogether. This seems to conflict with their earlier acknowledgement that “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.” Complete erasure of all STI data may not be in the patients’ best interests because of situations where some of it may be relevant to their health and/or that of their sexual partner or fetus. For example, among the confirmed cases of congenital syphilis, the most common missed opportunities for prevention were lack of timely prenatal care (28%) and lack of treatment despite timely diagnosis (31%).⁵ Instead of hiding data in the EMR, we could find ways to use it thoughtfully to improve care, such as a decision support tool to remind clinicians to screen pregnant people for syphilis when certain conditions are met, or to flag a positive test with a treatment reminder. The question is which data to include in the EMR and how to include it. Ethical, technological, and clinical considerations are key to answering these questions: Who determines if data is relevant or irrelevant? What are the unintended consequences when an algorithm curates or highlights certain data in person’s EMR chart?

Addressing STIs and sexual health requires education and training of clinicians and patients to reduce stigma and improve health outcomes. EMRs reflect our own biases and may perpetuate them. However, the solution to addressing STIs and sexual health isn’t to further “hide” the data, but to address the underlying causes of stigma with the goal of improving health outcomes. While striving to design more thoughtful EMRs is important, significant resources should be placed on clinician training and behavior as well as public health and sexual health education efforts to normalize sexuality and focus on healthy relationships.

In our attempts to destigmatize STIs with EMR fixes, we may create greater stigma. The authors point out that putting STI-related data in a sequestered location could create “a silo of stigmatizing health information, as could also be extrapolated to other conditions such as substance use or mental health, [and] may also further “other” these conditions.” Naming an action as stigmatizing without interrogating the reasons why suggests that the stigma is inherent and unchangeable. In the case of HIV, testing has moved from being a “special” conversation or lab test clinicians had to get written consent to send, to an increasingly routine and “normal” part of conversation about health maintenance without a separate consent process. HIV testing rates are still low in certain populations, but overall, the increased testing rates in the United States are likely one reason for decreasing incidence.¹³

Instead of focusing significant energy on the EMR as a path to decrease STI-related stigma and improve maternal health outcomes, we may have more success by increasing education and training for clinicians to take a gender-informed and empowering sexual health history. Certainly, EMRs are part of the solution, but we must look more broadly at ways to empower (and not distract or make it more difficult for) clinicians to provide culturally competent, trauma informed, and sex positive care.

There are several approaches to specifically address and improve sexual health. First, sexual health discussions between medical clinicians and patients must be routine throughout the lifespan.¹⁴ After onset of sexual activity, this should include asking about a history of STIs. A focus should be on routinizing sexual health discussions, recognizing and avoiding bias based on race, ethnicity, class, age, sexual orientation, gender identity, and other social distinctions. This is especially important for patients who face a variety of barriers to accessing culturally competent sexual health services, including youth, sexual minority and gender diverse people, and some racial and ethnic minority groups.^15–17 We must also advocate at multiple levels to improve sexual health education in schools¹⁸ and work to create and implement programs that help parents to normalize and destigmatize sexual health with their children from early childhood through young adulthood.^19,20 We can leverage EMRs as tools to help us prevent and treat suffering, such as predicting pre-term birth,²¹ and more accurately and systematically documenting sex, gender, and sexual orientation.²²

In summary, although changes to EMRs can hide or obfuscate STI history, this will not address the underlying issues of why STIs can be a “scarlet letter.” We must teach clinicians and patients to have sexual health discussions using a non-stigmatizing and non-judgmental approach. No one should bear a scarlet letter for STIs, and we must take the approach of Hawthorne himself and interrogate the structures and mindsets that lead to stigma and shame in order to break them down and rebuild a healthier, more accepting culture.