When Doctors Assume, Patients Lose

PHILADELPHIA – Collecting sexual orientation and gender identity, or “SO/GI,” data has valuable public health benefits and potential clinical benefits for an individual patient, but medical providers must continue to collect information about patient experiences and behaviors, where clinically appropriate, and avoid making assumptions based on SO/GI data alone, according to a study from researchers at the Perelman School of Medicine at the University of Pennsylvania published today in the Journal of General Internal Medicine.

Previous studies have delved into how the lack of SO/GI data contributes to health disparities experienced by LGBTQ patients – such as a higher risk of depression or anxiety disorders and greater rates of substance abuse than seen in heterosexual and cisgender populations – largely due to societal stigma and discrimination experienced by sexual and gender minorities.

This study takes this work a step further by illuminating how providers use SO/GI data in treating patients.

“Knowing a patient’s sexual orientation and gender identity can be helpful for providing patient-centered and respectful care. Providers must be careful, however, not to assume information about patients’ sexual behaviors, anatomies, relationships, or interest in interventions from SO/GI data, and should continue to inquire independently about these factors when clinically relevant.” said lead author Melissa E. Dichter, PhD, an assistant professor of Family Medicine and Community Health.  “Multiple studies report that patients are comfortable sharing this information. Having these conversations in the broader context of that patient’s life and background fosters a respectful relationship between healthcare providers and patients and leads to better care.” 

The findings may be useful in informing guidelines, training, and practices for incorporation of patient SO/GI data into current patient assessment practices to improve both individual and population level health.

The Penn team conducted 25 in-depth confidential in-person or phone interviews, averaging 43 minutes in length, with physicians, physician assistants, and nurse practitioners serving in a single health system. The survey asked for providers’ perspectives on the importance of obtaining patient SO/GI information; how the knowledge of patients’ SO/GI might affect their clinical care; the best ways to ask for and document patient SO/GI; any barriers or challenges in obtaining and utilizing patient SO/GI information; and what information, training, or resources are needed to collect and use patient SO/GI data in clinical care. Participants were from a diverse group in terms of gender, and years of experience, and all specialize in care for LGBTQ patients based on their professional profiles.

The qualitative responses from providers highlighted the need for comprehensive care for all patients, regardless of their orientation and identity. For example, some respondents noted that focusing too much on identity could result in inappropriately assuming behavior based on an individual’s orientation or gender. Instead, the authors urge providers to ask detailed questions about a patient’s sexual behaviors when it is clinically relevant.

One resident added that asking about sexual orientation could make a patient less comfortable with disclosing sexual behaviors, for example a patient who holds a heterosexual identity and has participated in same-sex sexual behavior may be less comfortable disclosing that activity if asked about identity before talking about behavior.

The federal government and other organizations, such as the National Academy of Medicine and the Joint Commission, recommend providers to obtain SO/GI information from patients to improve understanding of the health of sexual and gender minority populations and reduce health disparities.

Ten million Americans, or 4.1 percent of the population -- including 7.3 percent of millennials -- identify as LGBT, according to a 2017 Gallop poll.

Data collection occurred in January to August 2017. Since that time, Penn Medicine has begun system wide collection of SO/GI data, as reported in the Penn Medicine News blog. For example, in addition to reporting their sex at birth, patients are now offered the opportunity to confidentially provide specific information in their electronic health record about their gender identity and sexual orientation, as well as their preferred name, granular ethnicity and preferred spoken and written language.

Additionally, Penn Medicine established a Health Equity Task Force in 2016 to further advance initiatives to improve data collection and care for underserved populations.

The authors add that future research would benefit from gathering perspectives of providers in other settings and locations, including rural and non-academic medical institutions. 

In addition to Dichter, additional authors include Shannon Ogden and Kathryn Scheffey, both from Penn. The research team is next analyzing patient perspectives on SO/GI data collection.