2017-05-29 17:02:03
Gay and Transgender Patients to Doctors: We’ll Tell. Just Ask.

Do doctors need to know their patients’ sexual orientation and gender identity?

A growing number of federal agencies has been pushing health care providers to ask. Federally funded community health centers, which treat millions of patients, have begun to collect the data. Electronic health software must be able to store it. And blueprints for national health goals recommend collecting the information from all patients.

By knowing whether a patient is lesbian, gay, bisexual, transgender or straight, say public health experts, clinicians can be more alert to a person’s medical needs and more thoughtful in interactions. If hospitals report statistics on all patients, health care disparities among L.G.B.T. patients can be identified and redressed more effectively.

But most doctors and nurses are in no rush to comply. In several studies, they have said they feel uneasy about asking because they don’t want to make patients uncomfortable.

Research now suggests those assumptions may be wrong.

A new study of both patients and providers in the journal JAMA Internal Medicine looked at the feasibility of gathering such information in emergency departments. Nearly 80 percent of providers surveyed believed that patients would refuse to disclose their sexual orientation.

By contrast, only 10 percent of patients from a randomized, national sample of lesbian, gay, bisexual and heterosexual subjects said they would refuse. (Those who said they would decline were more likely to be bisexual.)

“Clinicians weren’t saying the information wasn’t important,” said Dr. Adil H. Haider, the lead author of the study and a trauma surgeon at Brigham and Women’s Hospital in Boston. “It was mostly paternalistic: ‘We don’t want to make anyone feel different.’ But it turns out to be that, ‘Doctors, you may have the best of intentions, but your patients want to be asked.’”

The signature message from the study, added Dr. Haider, the director of the hospital’s Center for Surgery and Public Health, is that “patients are saying that you’ll make us feel more comfortable if you ask — and ask everyone, so that normalizes the questions.”

In related work, the researchers surveyed 101 transgender patients: Nearly 90 percent thought it was important for primary care providers to know their gender identity, while nearly 60 percent thought sexual orientation was relevant. And they felt it was equally important for emergency department clinical staff to know both.

The movement to collect the information, which some public health experts compare in significance to gathering patient data on race and ethnicity, is gaining traction. Two independent advisory organizations, the Institute of Medicine (now the National Academy of Medicine) and the Joint Commission, have both strongly recommended doing so.

In February more than 1,400 health centers that receive federal funds and treat more than 24 million people annually were given the option to report to the government percentages of patients who identified in the previous year as lesbian, gay, bisexual or transgender.

And increasingly, hospitals and providers who participate in a financial incentive program with the Centers for Medicare and Medicaid Services will be shifting to electronic health records which, by 2018, must have the capacity to store sexual orientation and gender identity data. Patients can always refuse to answer; disclosure is voluntary.

Whether the Trump administration will sustain this momentum is unclear: A draft of an annual survey of older Americans, released in March by the Department of Health and Human Services, no longer included a question about sexual orientation.

Requiring that software systems include fields to document responses is not the same as mandating that providers actually ask the questions. And the slow uptake by hospitals reflects a tangle of challenges. Among them: What are the best ways to pose questions? (On a form? With what wording? In a face-to-face conversation?) How will patients’ privacy be safeguarded?

Physicians often fumble when they do try to gather the information, an indication of a need for training. During a consultation with a doctor, Laura Vail, 31, of Baltimore, one of several patients who advised the JAMA researchers, said she was asked, “What gender are your partners?”

Ms. Vail said she paused, unsure of the question. “The doctor moved right on,” she recounted. “My impression was that she just wanted to get through a list of questions. And I thought, ‘I’m not going to say anything if you don’t want to hear it.’”

In the past few years, a handful of health care entities across the country have begun to collect such data. Since 2014, all 100 practices affiliated with Weill Cornell Medicine in New York City have been encouraged to ask patients the information; 1,400 providers have been trained to do so.

In 2015 Mount Sinai Health System, which has seven hospitals in the city, began adding sexual orientation and gender identity questions to its outpatient and primary care electronic health record, and offering provider training.

But at the medical center at the University of California, Davis, which in 2013 became perhaps the first academic hospital to roll out a comprehensive data collection program for sexual and gender identity, results point to how difficult it can be to elicit this information.

Doctors and nurses are encouraged to ask, and patients can self-report — if they can find the questionnaire on online portals. But so far, data has been collected on only about 10 percent of patients.

“It is a painful lesson,” said Edward J. Callahan, a psychologist and professor at the university’s medical school. Until these demographic questions become standard, “providers and staff will not ask,” he said, adding, “It leaves the burden of telling on each individual patient, which is unfair — many older patients have been hurt in the past when they revealed.”

Jillian C. Shipherd, director of the Lesbian, Gay, Bisexual and Transgender Health Program for the Veterans Health Administration, noted that in the JAMA study, patients and providers were on the same page about how to ask. “Simply include sexual orientation as part of routine demographics on E.D. intake forms,” she said in an email. “This gets the doctors and nurses the information they need and everyone is comfortable.”

The researchers in the JAMA study, from Harvard and Johns Hopkins, are examining obstacles and solutions for emergency department questioning, and are continuing their trials. Indeed, in this study, in which 53 gay and bisexual patients and 26 emergency department providers were interviewed in depth to inform the national survey of 1,516 patients and 429 health care professionals, providers challenged the necessity of gathering such data.

With so little time and private space to treat patients in a busy emergency department, clinicians traditionally have been reluctant to ask information that they believed was not clinically relevant, said Dr. Jeremiah D. Schuur, a vice chairman of the department of emergency medicine at Brigham and Women’s Hospital.

Doctors felt such questions could be potentially stigmatizing, particularly when family members were in earshot, he added. But Dr. Schuur’s research on the JAMA study led him to realize that most patients in fact did not share that perception. “It is part of their identity,” he said.

Dr. Schuur said that, for example, when emergency department patients must be admitted to the hospital or prepped immediately for surgery, doctors often ask whether the patient would like them to communicate with someone. If the patient has already been asked about sexual orientation, he added, the patient might be comfortable allowing doctors to speak with a significant other.

And there are other good reasons to ask as well, said Dr. John P. Sanchez, an emergency department doctor at University Hospital in Newark. Millions use emergency departments for primary care, he noted. Patients often establish a medical record that will travel with them within the hospital or on future visits to the department. So documenting sexual orientation, he said, can have both immediate and continuing benefit.

But safeguarding patients who do disclose is essential, said Sean Cahill, director of health policy research at the Fenway Institute in Boston. “In many states without nondiscrimination policies,” he said, “disclosing can open them to more discrimination without redress. They can be denied services.”

So amid a push for more data collection, he said, “we also have to push for more protections.”