Data collection issues and standards
Continuous evolution of the terminology for identity relating to sex, gender, variations in sex characteristics and sexual orientation remains a challenge to accurately capture consistent and robust data on the health and welfare of LGBTIQ+ communities in Australia. The Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020 (2020 Standard) produced by the Australian Bureau of Statistics (ABS) aims to standardise the collection and dissemination of data relating to sex, gender, variations of sex characteristics and sexual orientation.
There is also growing momentum for large population-based surveys (for example, Census), which are best placed to ask well-defined questions around sex, gender, variations of sex characteristics and sexual orientation which allow for quantifying and analysing health outcomes and health service needs of different subsections of LGBTIQ+ communities. The ABS is consulting ahead of the 2026 Census on needed information that is not currently collected. This includes gender, variations of sex characteristics and sexual orientation.
Additional data issues for this diverse population include:
- Small population – the small size of the population can make it difficult to get meaningful findings from mainstream population surveys.
- More data on lesbian, gay and bisexual people than trans and gender diverse, intersex and queer people – most population surveys report on sexual orientation, not sex, gender diversity or variations of sex characteristics; surveys adopting the ABS 2020 Standard in full can look at gender diverse and intersex populations but the sample may still be small.
- Heterogenous population – for instance the experiences of gay and lesbian people may be very different to transgender people, and their experience may be very different to people with innate variations of sex characteristics; further complicated by intersectionality within LGBTIQ+ communities (for example, someone who identifies as both transgender and gay).
- Age profile of survey data – population surveys of LGBTIQ+ people often skew towards young people. On the other hand, Census data skew towards older people because the current Census data are only able to count cohabiting same-sex couples.
- Disclosure and safety - individuals may not feel safe/comfortable to self-identify even on confidential forms due to a history of discrimination.
Information on how the AIHW reports sex and gender can be found on the AIHW data by sex and gender page.
The National Drug Strategy Household Survey (NDSHS)
The NDSHS is run every three years and has recently changed the question around sex. In 2019 and earlier years, the survey simply asked people about their sex.
In 2019 and earlier years, the survey simply asked people about their sex at the time of the survey. In 2022, the survey was updated to replace this question with two questions from the Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables (ABS 2020). A third question was also added asking about sexual orientation.
Together, these questions can be used to derive cisgender (cis) and trans and gender diverse (trans) populations within the data.
This change was made to ensure that everyone completing the survey could respond accurately and feel represented, and to begin to examine tobacco, alcohol and other drug statistics for trans and gender diverse people.