The Medical Records Problem No One Talks About

When Stewart O’Callaghan was diagnosed with chronic leukemia at the age of 29, they faced a lack of awareness of LGBTQ+ needs, interpersonal skills, and support options within the UK healthcare system. They found themselves having to balance their physical health with their personal care needs as an LGBTQ+ person.

“You have to go back into the closet to get through the system as it is designed, rather than having your full identity and needs recognized and supported,” O’Callaghan, founder and CEO of OUTpatients and co-chair of the LGBTIQ workstream of the European Cancer Organization’s Inequalities Network, told Medscape Medical News.

A growing number of people are openly identifying as LGBTQ+, while many others prefer to keep their gender identity discrete. Medical systems are lagging when it comes to providing inclusive, sensitive, and comprehensive care that addresses the unique needs of LGBTQ+ individuals, particularly for those who face barriers to sharing their identities.

“They don’t always know what care they’re going to get if they disclose,” Alison May Berner, MBBS, PhD, an oncologist and affirming care clinician at Chelsea and Westminster Hospital NHS Foundation Trust, London, England, explained to Medscape Medical News. Healthcare professionals also often lack the training to handle such information with sensitivity and confidentiality.

At the same time, failing to reveal biologic sex and gender identity can influence diagnosis and treatment outcomes and even be a matter of life and death in some cases.

Gender Data Matters

Accurate gender recording in healthcare is essential, not only for respecting patient identity but also for making informed clinical decisions.

A patient’s biologic sex and gender identity both play distinct roles in diagnoses and treatments. For instance, heart disease can present differently in men and women, certain medications may have sex-specific effects or side effects, and knowledge of a patient’s anatomy is critical for accurate diagnosis and care. A transgender man may still require cervical cancer screening, while a transgender woman may need prostate examinations, explained Jeanine Roeters van Lennep, MD, PhD, an internist specialized in vascular medicine at the Erasmus Medical Center, Rotterdam, the Netherlands, and a researcher in sex- and gender-specific medicine. Automated screening systems that rely on gender markers can exclude transgender patients, preventing them from accessing important preventive services.

Proper documentation of gender history and transition-related care also ensures continuity of care. Patients often interact with multiple providers across their healthcare journey, and consistent, accurate records enable seamless transitions between practitioners. This is particularly important for those undergoing hormone therapy, gender-affirming surgeries, or treatments influenced by hormone levels or anatomical factors. Accurate records prevent errors, such as prescribing contraindicated medications or making incorrect assumptions about a patient’s anatomy.

However, assumptions and biases continue to interfere with patient-centered care. For example, in cancer care, heteronormative assumptions can override a patient’s autonomy and preferences, explained O’Callaghan. They shared the case of a transgender patient who explicitly declined breast reconstruction after breast cancer surgery. Yet the healthcare team left tissue on the chest for future reconstruction based on normative expectations of how a cancer survivor’s body should look.

Such disregard for patient wishes undermines their autonomy and erodes trust in the healthcare system. “There’s a lack of understanding of how someone’s gender identity can be central to their personhood,” O’Callaghan said. “There is an antiquated view that it just happens at home, behind closed doors, whereas some people live and breathe their queer identity, and it’s important for them to be authentically themselves at all times.”

Disclosure Involves Risks

As important as it clearly is for patient information to be revealed, disclosing biologic sex and gender identity is a deeply personal decision that can come with risks, including discrimination, stigma, and privacy breaches.

“Gender stereotypes and biases can cause healthcare providers to dismiss or minimize a patient’s concerns,” explained Roeters van Lennep.

Some patients report being denied care or having their needs misunderstood on the basis of their gender identity, O’Callaghan added. These biases can lead to inappropriate or inadequate care, particularly in sensitive areas such as fertility, intimate relationships, or managing the physical and emotional impacts of treatments.

Privacy breaches pose another significant issue. Whether intentional or accidental, they can have profound social consequences. In smaller communities, for example, being outed could lead to ostracization or even violence, particularly for someone from cultural or religious backgrounds where LGBTQ+ identities are heavily stigmatized. “Someone accidentally outs you at the GP, and, suddenly, the whole village knows,” said Berner.

The fear of such consequences often makes patients hesitant to disclose their identity, damages people’s trust in the healthcare system, and discourages engagement with care, Berner added.

She explained that people are generally more willing to share details about their sex and gender when healthcare providers:

1. Clearly explain why they need this information, such as determining whether the patient has specific organs or was exposed to particular hormones, rather than simply collecting data for equality monitoring. “People [would] have different willingness to share that information,” Berner said.
2. Demonstrate confidence in providing care to LGBTQ+ patients, which helps build trust and comfort.
3. Ensure patient privacy by safeguarding sensitive gender identity information and controlling who can access it within medical records.

Change Starts With Education

Berner recalled witnessing staff prioritizing logistical concerns, such as deciding whether a transgender patient should be placed in a male or female ward, over addressing the patient’s well-being. She explained that this lack of knowledge and cultural competence in providing inclusive care fosters feelings of alienation and mistrust among patients.

A clear example is the phenomenon known as “transgender broken arm syndrome,” where healthcare providers fixate on a patient’s transgender identity, even when irrelevant to the medical issue at hand. A transgender patient seeking treatment for a broken arm, for example, might instead face questions about their transition, hormone therapy, or surgical history, diverting attention from their immediate medical needs. This misplaced focus can make patients feel othered and disrespected, O’Callaghan said.

Mandatory LGBTQ+ cultural competency training for medical students and practicing providers, they argued, would help address these gaps. Such training would dispel misconceptions, teach providers how to hold respectful conversations about gender identity, and emphasize the importance of using patients’ correct names and pronouns.

According to O’Callaghan, policy changes are also needed, including modernization of electronic health records to document both the sex registered at birth and the patient’s current gender identity. Storing sex-at-birth data in a private section of the medical record, accessible only on a “need-to-know” basis, could ensure privacy while facilitating optimal care.

“Healthcare providers work in a system built decades ago, and change is long overdue,” O’Callaghan stressed. They also noted that sociopolitical pressures threaten affirming attitudes to transgender health, increasing medical mistrust. “If we are to reach a workable solution, the transgender community must be directly and meaningfully involved in its development.”

Understanding that gender identity is a nuanced, evolving concept supports the need for more thoughtful and inclusive healthcare practices. “Gender identity is a complex system,” said Roeters van Lennep. “It’s not about ticking a box on a form. Gender is fluid. It’s time-dependent, and it’s context-dependent.”

O’Callaghan, Berner, and Roeters van Lennep reported no relevant financial relationships.

Manuela Callari is a freelance science journalist specializing in human and planetary health. Her words have been published in The Medical Republic, Rare Disease Advisor, The Guardian, MIT Technology Review, and others.