by: Leslie Suen, MD
Pronouns: She, Her, Hers
As a researcher and primary care doctor, I spend a lot of my day thinking about questions and how to ask these questions. Am I asking questions in a way that makes the responder comfortable, or am I asking them in a way that makes a lot of assumptions? Are the questions I’m asking getting me the information that will actually help the person in front of me? Are my questions even clear?
Language matters, and how we ask questions can matter just as much as what we’re asking, especially when it comes to important topics like asking about someone’s sexual orientation and gender identity. In health care and in research, whether and how we ask questions about someone’s Sexual Orientation or Gender Identity (SOGI) can have significant impact on how visible (or invisible) sexual and gender minority people are in our society. By accurately and inclusively collecting information on SOGI, we can better understand the diversity, strengths, and needs of these communities to ensure better health and resource allocation for everyone.
Unfortunately, current SOGI questions in research studies often don’t meet the needs of sexual and gender minority people. To address this, I along with other members of the The PRIDE Study team conducted the “Questions on Sexual Orientation and Gender Identity” (QSOGI) study, involving focus groups and cognitive interviews. We asked a large group of sexual and gender minority people from The PRIDE Study: “How are current SOGI questions limited, and how can we improve them to better meet the needs of sexual and gender minority people?”
We heard from lots of different folks, diverse in their sexual orientation or gender identity and also diverse in race, ethnicity, class, education, and location. We received several perspectives, and in our first published paper from the study, we focused on two main findings:
#1: SOGI questions weren’t clear enough as to what dimension of sexual orientation or gender identity they were asking about.
Sexual orientation questions didn’t differentiate enough about whether questions were asking about sexual identity, behavior, or attraction. Gender identity questions didn’t differentiate enough between gender self-identification, gender expression, anatomy, among many other dimensions. When these questions weren’t clear, people answered in different ways or skipped these questions all together.
#2: SOGI questions often failed at acknowledging the complexity and fluidity of people’s identities.
Participants frequently discussed how diverse their identities were. For some, it was difficult to only choose one answer for their sexual orientation or gender identity; for others, it was important to have space to write-in their identities if they didn’t see themselves represented in other answer choices. They also wanted questions to acknowledge how identities could be dynamic, changing from one identity to another over time or be fluid in general.
Based on these perspectives we made recommendations for future researchers to consider when designing new and improved SOGI questions. Researchers need to be clear about what dimension of sexual orientation or gender identity is being assessed, including an option for selecting multiple answers, and having the option to write-in responses, among other recommendations to capture the complexity and fluidity of people’s identities. We hope these recommendations will help improve the experiences of sexual and gender minority people participating in research studies and to allow for more inclusive, accurate data collection for all.
You can read more about this study and other The PRIDE Study publications at: https://www.pridestudy.org/research
Research to change lives.
Our community has faced adversity, but struggle after struggle, we prevail. Now, LGBTQ+ people must join together to improve our well-being.
The PRIDE Study is supported by the community engagement efforts of PRIDEnet, a national network of individuals and organizations that engage LGBTQ+ people in health research. The main question we want to answer is: how does being LGBTQ+ influence physical, mental, or social health? Help us find answers by joining at: pridestudy.org.
