Health care professionals should improve data collection of patients’ sexual orientation and gender identity to improve the quality of care received by patients and their loved ones, writes Carey Candrian, PhD, associate professor of medicine at the University of Colorado School of Medicine, in a perspective article published The New England Journal of Medicine.
In the article published August 10, Candrian and co-authors Joel S. Weissman, PhD, of Brigham and Women’s Hospital and Harvard Medical School, and Jennifer Tjia, MD, MSCE, of UMass Chan Medical School, note the information is not routinely collected or used by the U.S. health care system despite previous calls by leading institutions to do so.
Among the institutions calling for collecting the data are the Joint Commission; the National Academies of Sciences, Engineering and Medicine; the Centers for Disease Control and Prevention; the Centers for Medicare and Medicaid Services; and the White House.
“Many health care organizations haven’t focused on cultural tailoring of data-collection approaches or safety training in this area,” the authors write. “Health workers could benefit from training that offers concrete skills for creating safe spaces and explores when to ask questions about [sexual orientation and gender identity] and how to do so in a way that doesn’t perpetuate discrimination and instead facilitates safe interactions for patients to disclose this information.”
Longstanding biases
Candrian cites extensive evidence that LGBTQI+ people face discrimination throughout their lives, resulting in lower quality health care and shorter lifespans. In 2023, she received funding from the National Institute on Aging to develop a novel intervention to improve care for sexual and gender minority older adults in hospice.
In the article, Candrian and her colleagues acknowledge that there are difficulties involved in collecting information due to longstanding biases against LGBTQI+ people, but they note that are ways to incorporate data collection in sensitive, safe, and respectful ways on clinical, research, and administrative forms.
“Collecting this information is long overdue,” says Candrian. “It is equally important to pay attention to how the information is collected: the way these questions are asked, when they are asked, how they are asked, what people do with the information, and how knowing this information allows people to provide better care to LGBTQI+ patients. Hopefully, such questions become routine, just like asking about race, age, and ethnicity.”
Incorporating changes
The medical community can incorporate changes that will let LGBTQI+ patients and caregivers know they are safe to share who they are. “Safety can be communicated by means of signs, symbols (e.g., pins and lanyards), marketing materials, forms that permit responses that are in keeping with people’s individual identities, and language,” the authors write. “For instance, instead of asking a patient whether they are married, health workers can ask, ‘Who is the most important support person in your life?’”
Weissman is chief scientific officer of the Center for Surgery and Public Health at Brigham and Women's Hospital and professor of surgery (health policy) at the Brigham and Women’s Hospital and the Harvard School of Public Health. Tjia is tenure-track professor of population and quantitative health sciences at UMass Chan Medical School.
