After losing its bid to include sexual orientation and gender identity questions in the 2021 census, the Australian Bureau of Statistics is paving the way for collecting meaningful data about LGBTQI+ people in other upcoming surveys.
Seven health surveys scheduled to commence in the coming months will be the first ABS surveys to implement new statistical standards for sex, gender, variations of sex characteristics and sexual orientation.
The new standard, released on Thursday, allows for counts for cis and trans populations, non-binary identifying people, and clarifies that individuals may choose to answer their sexual orientation in a number of ways that may change throughout their lifetime.
LGBTIQ+ Health Australia chief executive Nicky Bath said not asking those questions was like having a jigsaw puzzle with too many missing pieces.
"We need to understand how many of our community members are incarcerated, are living in aged care homes," Ms Bath said. "Currently the data on the health and well-being of our communities has significant gaps which is hindering government responses and reducing the benefits we can gain from being included in, for example, minimum data sets and coroners' data."
Ms Bath and her colleagues are working to get the ABS standard incorporated into all government and research surveys leading up to having gender and orientation questions included in the 2026 census.
The ABS won't be including the new questions in all surveys, but where the survey design has indicated researchers need the information. It builds on a previous standard that didn't include sexual orientation or collection of non-binary gender responses.
The Department of Health and the ABS are running seven surveys as part of the Intergenerational Health and Mental Health Study, which will include the new standard questions on gender and sexual orientation for the first time.
The study will explore mental health, nutrition, physical activity and biomedical sample collection allowing testing for undiagnosed conditions. It will also include a targeted survey to the Aboriginal and Torres Strait Islander population.
The ABS has been collecting data on sexual orientation since 2007, but the questions were not widespread in surveys and were not standardised.
After the government chose not to proceed with including sexual orientation in the 2021 census, the bureau released a statement that it planned to keep producing meaningful data for LGBTI communities through its survey program.
Dr Liz Allen from the Centre for Social Research and Methods said there has never been a whole-of-population survey of Australians that would help to understand the LGBTI community.
"Something like the census is invaluable," Dr Allen said. "Unlike sample surveys which may not capture a true snapshot of the LGBTI community, it allows a complete examination of all people right across the country, right from remote communities, regional areas and major cities."
Fair and appropriate provision of services to meet the needs of LGBTI people is vital but has come from data with little precision, Dr Allen said, such as deciding the sexual orientation based on the gender of one's partner, instead of asking the question directly.
"It comes down to recognition. What is counted matters," she said.
"Research shows that the LGBTI community experience a raft of adverse social and health issues due to discrimination - ending discrimination starts with understanding a population group."
Philippa Moss from Meridian, which provides services to people in the ACT impacted by HIV, said public discussion on sexuality and gender identity is often discriminatory.
"Those who do not identify as male or female or heterosexual feel invisible to the wider community," Ms Moss said. "We need data about our communities to ensure access to the supports and services that people need, to challenge discrimination and to build political power.
"Every time a government report is released we are reminded how disadvantaged we are in responding appropriately to our communities needs due to the lack of population level data."