Data collection doesn’t sound like something that can keep people safe or make them healthier, but for the LGBTQ+ community, that’s exactly what it can do. 

MaryJo Schnell, the OutCenter’s Executive Director, recently joined Mosaic Health & Healing Arts, SAGE Metro Detroit, Michigan Hospital Association’s Keystone Center, Michigan State University and Michigan Public Health Institute (MPHI) for a state-wide webinar presentation to health professionals on LGBTQ+ informed care, and specifically how data collection can improve experiences for LGBTQ+ patients.

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Data collection is important because without data about LGBTQ+ patients — their identities, their backgrounds, etc. — it’s nearly impossible to determine disparities and nearly impossible to create equitable health care policy. And just as important: the need to educate the medical community about LGBTQ+ patient care so they possess the necessary competencies.

During the presentation, Mixhi Marquis, Mosaic’s Executive Director and Cofounder, shared a story about a trans person all set to undergo gender affirmation surgery. The person was on the operating table and under anesthesia when the hospital’s administration came down to the operating room and stopped the surgeon. The patient was brought out of anesthesia without undergoing their surgery.

“Wow, talk about trauma,” Mixhi said. “This all relates to data collection. Our medical system is incredibly uninformed on how to care for [LGBTQ+] folks and we need the data to help that education piece happen.”

The Centers for Disease Control and Prevention acknowledge that data, and by extension, data collection is vital. Via their website: Without data, LGBTQ+ “patients and their specific health care needs cannot be identified, the health disparities they experience cannot be addressed and important health care services may not be delivered.”

Mixhi used the example of COVID-19. In the beginning, we didn’t know much about the disease, because no data existed and so scientists and epidemiologists were only able to make educated projections. But as more data was gathered, our techniques and policies for fighting the spread of the illness changed and adapted to be more effective. 

LGBTQ+ patient care remains stuck in that first step. We need to collect more data to give providers the tools they need to ensure patient safety for everyone, including LGBTQ+ people and their families.

Part of the challenge of gathering data is that many LGBTQ+ folks just aren’t accessing care, either due to lack of health insurance or due to past trauma from health care providers. 

MaryJo discussed her own medical trauma during the presentation. In the mid-80s in Chicago, she went to a clinic for a checkup. Initially, the doctor was great. But then she asked about birth control, MaryJo said no, she wasn’t on any. Then the doctor asked if MaryJo was sexually active and MaryJo replied that she was. The doctor asked if she wanted children. MaryJo said no, not right now, and clarified that she’s a lesbain. 

“The doctor actually got up and, without saying a word, left the room, and then in comes a nurse who’s a lesbian,” MaryJo said. 

Years later, living in a different place and attempting to bring LGBTQ+ competency to a hospital system, MaryJo had become known to that hospital and had heard of religious objections from staff about LGBTQ+ Competency Workshops. Then she was in a car accident. While she was in the ambulance with a cracked sternum and seizures, “I’m thinking, oh my god, they’re going to take me to that place…and they know me there.”

The trauma from that experience has remained with her.

“I’m living that still,” MaryJo said. “It doesn’t have to be that way.”

Medical providers need to be informed and use care when collecting data about their LGBTQ+ patients. That means using inclusive language like “assigned female or male at birth” instead of “born female or male.”

It means not singling people out. Mosaic uses the same pronouns questionnaire for all their patients, instead of making assumptions about who might want to use specific pronouns.

Not making assumptions is a big part of compassionate care, Mixhi said.

Medical providers need to have a clear, consistent plan for when and where they will ask sexual orientation and gender identity questions, whether that’s on intake and demographic forms, or as part of a questionnaire administered by MAs or nurses.

“Data collection needs to be done in a way that doesn’t traumatize people more,” Mixhi said.

There are examples of our medical system changing for the better. In September, the Michigan Department of Health and Human Services issued a bulletin clarifying that, effective November 1, the Medicaid program covers medically necessary gender affirmation/confirming medical, surgical, and pharmacologic treatments and procedures for beneficiaries clinically diagnosed with gender dysphoria. Treatment and procedures for the health management of individuals with gender dysphoria will no longer be considered elective or cosmetic – their treatment is medically necessary.

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