The All of Us Research Program: listening as a tool of community outreach

by Sophia Kass, Positively Trans Program Associate for the Transgender Law Center and a PRIDEnet Peer Ambassador for the All of Us Research Program

Sophia Kass

In 2016, the UCLA Williams Institute estimated that “0.6% of adults in the United States, or 1.4 million individuals, identify as transgender.” Even though the GLAAD 2017 report placed that number closer to 3%, transgender and gender non-conforming (TGNC) people in the U.S public health research sector are, more often than not, lumped — if not erased — under categories such as “others” or “sexual minorities” (which honestly is a more accurate term for LGB folks than it is for TGNC folks). That being said, the antidote to this statistical erasure is intentional representation and inclusion in data.

The All of Us Research Program is one such effort. On the one hand, it aims to gather data from a tremendous number of around 1 million people living in the United States. On the other hand, it strongly commits to a transformational approach to diversity in recruiting participants, with the goal to produce meaningful health outcomes for communities historically underrepresented in biomedical research (AKA our trans and gender non-conforming communities).

Additionally, the Program employs another tool for inclusion whose power is often overlooked and underestimated when it comes to medical research: listening as a tool for outreach. Even as a transgender woman myself, I was reminded during one listening session of the unapparent geographical, technological, socio-economic and stigma related barriers that prevent us, both as TGNC individuals and as a community, from accessing healthcare information as well as from participating in healthcare research.

To close, I always try to remind myself that behind each number recorded in a database or in research is an individual with a life and a story; therefore, an outcome or a solution that doesn’t work for each one of us will not work for all of us. This is what the All of Us Research Program means to me.