How a 25-year-old periodic survey for lesbian, bisexual and queer women responded and adapted to gender diversity: a reflexive analysis

Abstract

Twenty-five years ago, the first Sydney Women and Sexual Health (SWASH) survey sought to generate knowledge about HIV risk for women in contact with Sydney’s gay and lesbian community. SWASH has gone on to become the longest running periodic survey of lesbian, bisexual and queer (LBQ) women’s health. It reflects LBQ women’s lives back to them and makes LBQ women knowable for Australian public policy. But, like all research, the social reality SWASH produces is a partial representation of the target population. As it entered its 12th iteration, it became clear the survey needed to change to better represent trans and gender diverse people’s lives. In this paper, we describe our process of first adding inclusive gender indicators, and then applying a gender diversity lens to all survey questions, data collection and reporting. We reflect on our motivations and fears, and where we can, the consequences on data of previous and new research design choices. Reflexive analysis such as ours, though still rare in quantitative research, promotes accountability to communities we research and the sectors who use the knowledge we produce.