The Oregon Legislature has given final approval to House Bill 3159, also known as the Data Justice Act. Championed by Cascade AIDS Project, the bill positions Oregon as a national leader in collecting data on LGBTQ+ health disparities.  

 The Data Justice Act requires healthcare providers to collect and report to the Oregon Health Authority (OHA) data on their patients’ sexual orientation and gender identity, as well as their race, ethnicity, preferred language, and disabilities. Currently, providers are only required to collect some of this data from COVID-19 patients, and are not required by law to collect any sexual orientation or gender identity data. In addition to mandating data collection by providers, the Data Justice Act directs OHA to develop a database for storing and analyzing patient demographic data.

LGBTQ+ people experience many health disparities, including higher rates of tobacco use, cancer, and psychological distress. However, OHA collects little to no information about LGBTQ+ residents. In this, Oregon certainly isn’t alone: Few government agencies collect demographic data on LGBTQ+ people. (Most notably, the U.S. Census Bureau does not ask any questions directly related to sexual orientation or non-binary gender identity.) “As far as we know, Oregon is the first state to pass a requirement that health care providers collect and report sexual orientation and gender identity,” says Sean Cahill, Director of Health Policy Research at Boston’s Fenway Institute. “We commend Oregon legislators and advocates for taking this important step for LGBTQ health equity.”

The Data Justice Act will also dramatically expand collection of data on health inequities related to race, ethnicity, preferred language, and disabilities. The law ensures that patients can decline to provide demographic data.

A coalition of more than 30 community organizations endorsed the Data Justice Act, including Basic Rights Oregon, Virginia Garcia Memorial Health Center, and the SEIU Oregon State Council. The bill’s chief sponsor was Representative Rob Nosse, and its lead advocate in the Oregon Senate was Senator Kate Lieber. For more information about this legislation, please contact CAP’s public-policy manager, Jonathan Frochtzwajg, at jfrochtzwajg@capnw.org.

About Cascade AIDS Project

CAP is a non-profit organization that was founded in 1985 as a grassroots response to the AIDS crisis. As the oldest and largest community-based HIV services provider in Oregon and southwest Washington, we seek to support and empower all people with or affected by HIV, reduce stigma, and provide the LGBTQ+ community with compassionate healthcare. We do so by helping to ensure the health and well-being of our program participants each year through health, housing, and other social services. When the need for affordable, accessible, and culturally affirming primary care services was identified as a community need, we responded by opening Prism Health in 2017.  More information can be found at www.capnw.org.