Creating better healthcare experiences for transgender and gender-nonconforming patients

Keith-BrickAs we celebrate Pride Month, there are still many challenges that LGBTQIA+ people face in healthcare. While we’ve seen progress on the road to ensuring everyone has the opportunity to seek care in a safe and welcoming environment, more than half of surveyed lesbian, gay, and bisexual patients report experiencing discrimination in healthcare. That number jumps to 70% among transgender or gender-nonconforming patients.

To help illustrate these challenges, and the tools healthcare organizations can use to improve outcomes, let's walk through a hypothetical outpatient encounter from the perspective of a nonbinary patient named Alex.

The events of Alex’s previous hypothetical visit (in the left column in the table below) are drawn from the testimonials of thousands of transgender and gender nonconforming patients who have responded to surveys by Lambda Legal and The Fenway Institute. In the right column, you'll see examples of how providers can create a more welcoming experience.

As you read, think about the experience Alex might have at your healthcare organization.

A previous visit

Today's scenario

Alex scheduled an appointment by phone.

  • Alex had a nonurgent medical concern, a persistent cough, and scheduled an appointment with the next available family medicine provider that accepted their insurance.
  • Clinic staff assumed Alex’s gender from their name or voice and documented it incorrectly during registration instead of allowing Alex to self-identify.

Alex schedules an appointment online with a primary care provider.

  • Alex searches for a new primary care provider after experiencing discrimination during their previous encounter.
  • Their insurance company's provider directory doesn't list any doctors who specialize in care for LGBTQIA+ patients, but a local clinic’s website makes it easy to find providers who are familiar with the needs of this patient population.

A patchwork of legal and technical barriers complicated the process of providing identifying documents.

  • Each state has different requirements for updating IDs and driver’s licenses. Like many transgender and nonbinary patients, Alex's insurance card still lists their sex assigned at birth.
  • Alex’s old ID still lists the name “Alice” and their sex as female.

Alex gathers identifying documents and insurance information.

  • Alex is fortunate to live in one of 18 states that allow the nonbinary marker "X" on driver's licenses, and recently received their new license.

Unclear policies on patient identification exacerbated errors during registration.

  • Registration staff have trouble finding Alex’s appointment.
  • Registration staff refuse to use Alex’s name, and insist that a court-ordered name change is necessary to update their medical record. Staff registered the patient as “Alice.”
  • Alex was told “that doesn’t exist; you have to choose one or the other” when they attempted to explain that they were neither male nor female.

Registration staff collect identifying documents and allow Alex to self-identify.

  • The Joint Commission recommends that staff document a patient's gender identity in addition to their legal sex and sex assigned at birth. (Note: Epic can be configured to allow staff to document these three separate concepts, make them available in Welcome and MyChart, and even record a payor member's name and sex distinctly, so that the information in a claim matches what the insurance has on file.)
  • Even in jurisdictions where nonbinary patients do not yet have legal recognition, patients may present valid identifying documents with a nonbinary identifier.

Outdated paper registration forms omit important questions that are relevant to Alex’s health.

  • Check boxes for “male” or “female” offer a single choice for patient sex. Alex writes into the margins but knows that the staff are unlikely to record it.
  • The family history form exclusively uses gendered language. Alex documents a family history of breast cancer.
  • The medical and surgical history form doesn’t have space for Alex’s mastectomy, but once again Alex writes into the margins.
  • The social history form doesn’t ask about Alex’s sexual orientation or sexual behavior.

Alex completes the medical, family, and social history registration forms electronically.

  • Alex uses a digital kiosk, which includes a series of questions that allows (but do not require) patients to disclose information about their gender identity and sex. The questionnaire reassures Alex that this information is confidential and will be protected. A pamphlet in the waiting area helps Alex and other patients understand the importance of these questions:
    • What name would you like us to use? Alex
    • What are your pronouns? They/Them
    • What is your gender? Nonbinary
    • What sex were you assigned at birth? Female
  • The questionnaire includes questions about sexual orientation and sexual behavior. Both are necessary to understand health risks that individual patients might face and to evaluate trends in outcomes for these populations.
  • The language used in these forms accommodates diverse families, with words such as "spouse" and "parent" in place of "husband/wife" or "mother/father."

The medical assistant called for “Mrs. Smith” in the waiting room and addressed Alex as “Alice” in the exam room.

  • Alex was not dressed as a woman and felt uncomfortable responding to feminine forms of address.
  • When Alex asks the MA to call them Alex, the MA insists that they need to use the demographic details on the chart “for patient safety.” The MA’s training didn’t include the mental health impacts of deadnaming.

When called in the waiting room, the registrar or medical assistant address Alex by name.

  • Especially for transitioning patients, using their chosen name is critical to creating the safe and trusting relationship necessary to provide quality care. An NTCE survey in 2015 found that more than two-thirds (68%) of transgender respondents had no IDs that matched their name and gender, so allowing patient self-identification is critical.

The medical assistant reviewed the paper forms and confronted Alex about the notes written into the margin.

  • “Why did you write this?” “I’ve never heard of that before.” “Patients like you don’t normally come here.” “You’ll have to talk to the doctor about that.”
  • Alex was put in the uncomfortable position of needing to defend and explain themselves to a member of their care team.

The medical assistant asks additional questions about Alex’s medical history and reviews the information given in the questionnaires.

  • The medical assistant sees that Alex has left some questions blank and creates a welcoming environment by explaining how the information would help the treatment team provide the best possible care and by asking open-ended questions. Unlike previous encounters, Alex feels safe disclosing sensitive information. When Alex uses words such as intersex, genderqueer, or nonbinary, the medical assistant understands because their training included this vocabulary.

The physician asked Alex to remove their shirt during the physical exam.

  • Due to Alex’s experience with staff earlier in the visit, Alex doesn’t feel comfortable exposing their scars. Alex later overheard the physician complaining to the MA that "she was uncooperative.”
  • The physician asked Alex why they had a mastectomy, but didn’t document the answer in Alex’s chart. Transgender and gender-nonconforming patients report frequently being asked questions that satisfy a provider’s curiosity but were not relevant to their medical concerns at the time. They also report frequently needing to repeat explanations to staff who do not understand them.
  • The physician recommended a chest X-ray and over-the-counter cough suppressants.

Having reviewed this information, the primary care provider conducts an exam that is respectful of Alex’s anatomy and autonomy.

  • Because the patient's name and gender were displayed prominently in their chart, the provider uses these correctly when talking to and about Alex. (Note: Epic Storyboard can be configured to emphasize the patient's gender, pronouns, and chosen name.)
  • When considering sex-specific dosing or reference ranges, the provider uses the complete information now documented in their chart. (Note: Epic released a Foundation System “sexual orientation and gender identification [SOGI] SmartForm” that captures all relevant details in a single place for quick review.)

The physician didn’t provide preventative care.

  • Because of Alex’s family history, they may still be at risk for breast cancer in the remaining tissue.
  • Because Alex has a cervix, they are still at risk for cervical cancer.

The physician places routine orders for Alex’s common healthcare needs.

The provider understands the risks faced by sexual and gender minorities and can place routine orders for Alex, including a cervical cancer screening and a prescription for hormonal birth control.

Follow-up care was delayed, or denied outright.

  • All patients deserve access to routine healthcare, but even routine cancer screenings can expose transgender and gender nonconforming patients to physical and verbal abuse, denial of care, and denial of coverage.
  • The physician told Alex that they don’t know of any local providers “who treat transgendered patients."
  • Preauthorization for a chest X-ray was denied because of a mismatch between the insurance demographics and Alex’s registration. Alex was told to come back later to complete their visit.

The physician offers appropriate referrals to specialists for care outside their scope of practice.

  • More than half of LGBT patients report that there are not enough medical professionals in their communities trained to meet their needs. In many communities, it remains impossible for transgender and gender nonconforming patients to see gynecologists, endocrinologists, or psychologists for routine treatment.
  • Alex is fortunate that this provider is able to refer them to the organization's point-of-contact for LGBTQIA+ care.

Alex received an unexpected bill for the encounter.

  • The clinic staff had insisted on using Alex’s legal name, which didn’t match the name on Alex’s insurance card, so the claim was denied.
  • Alex’s cough resolved itself before the insurance preauthorization was corrected by the clinic, so they didn’t return for the X-ray. Alex never received a diagnosis or treatment for the cough.
  • Alex experienced more harm than help from their visit to the clinic. After several hours on the phone with both their insurance and the clinic, Alex is finally able to pay their copay, while their insurance covers the cost of their visit.

The clinic's staff bill Alex’s insurance for the visit.

  • Section 1557 of the Affordable Care Act prohibits discrimination on the basis of an individual's sex. Although HHS has rolled back provisions related to gender identity, state legislatures and subsequent case law make this a constantly changing legal landscape. Organizations can ensure their compliance by updating their policies and training to prevent discrimination.
  • The clinic that Alex visited will submit a claim that uses the patient's sex expected by the payor. (Note: it may include the following:
    • Professional Billing: Adding modifier “-KX” to the gender-specific CPT code at the service line level.
    • Hospital Billing: Adding condition code “45” to the appropriate claim field to indicate a gender-specific service.

Each step of the way, the training and tools that this clinic's staff had received made it possible for Alex to receive the care they needed.

These tools are freely available through the Human Rights Campaign's Healthcare Equality Index, and more than 680 organizations have already begun to use these resources to improve outcomes and equality in their communities. (Note: Last year, California organizations using Epic collaborated to produce the SGN Whitepaper [available on the UserWeb] detailing the technical tools and decision-making steps we used to support Senate Bill 179, which affirmed the rights of gender minorities.)

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