The PRIDE Study is the first large-scale, long-term national health study of people who identify as lesbian, gay, bisexual, transgender, queer (LGBTQ+), or another sexual or gender minority. People participate in the study over time, providing researchers with vital insights on the health and well-being of LGBTQ+ people. The PRIDE Study is based at Stanford University School of Medicine with a site at University of California, San Francisco.
Most recently, The PRIDE Study collaborated with the Health eHeart Study to do a large-scale study with thousands of people on how to improve demographic survey questions that are currently used by several studies in the United States. In this study, we were focusing on how to improve sexual orientation and gender identity questions to make sure they yield accurate information and help people feel comfortable.
We found that some question wording was better than others and some of the wording of certain questions made many of our participants uncomfortable and felt plain “wrong” to them per the initial feedback we received. We are also finding that people will answer these questions differently depending on the context they are asked in (whether the questions are posed by a government agency or in a health care setting for example) and the way the questions are phrased.
The study is still being analyzed but is already helping us understand that many LGBTQ+ people feel excluded when taking current surveys which may result in abandoning the survey or not being fully represented. Accurate identification and inclusive data collection are critical to improving outcomes and reducing disparities. You can read more about the study description on the NIH website and learn more about The PRIDE Study.