Census data gap is a blow for LGBTIQ+ research

The Census is of the most vital tools we have to collect data at a population level, capturing a snapshot of millions of Australians – but it fails to ask questions about gender or sexual orientation, leaving a data gap about the LGBTIQ+ community.

According to Nicky Bath, chief executive officer of LGBTIQ+ Health Australia, LGBTIQ+ communities will remain “invisible” without this data.

“[The Census] helps governments, policy makers, service planners to understand how the population is changing and how to respond,” explains Bath. “Importantly it informs healthcare, schools and local services.

“With the significant health disparities that are experienced across our communities, we need data from the Census so we can better respond to our health needs.”

Bridget Haire, a senior research fellow at the Kirby Institute with experience in HIV and sexual and reproductive health research, says we really know nothing about LGBTIQ+ communities at a population level.

“We don’t know how many trans people there are in Australia,” she says. “We don’t know how many people living with intersex variations there are in Australia. We don’t know precisely how many men who identify as gay or women who identify as lesbian or people who identify as queer – we just don’t know those basic statistics.”

Having this data, she says, would make a huge difference to research.

“It’s important…to estimate the size of a particular population. For example, if we do a big survey of transgender people in Australia…we can’t tell how representative that survey is because we don’t know how many people there are.”

Bath adds that this data gap extends beyond Census questions – other examples include “national and jurisdictional government health and wellbeing service data sets, coroners court data and many research studies.

“Where demographic data is captured in a variety of settings, you will know from your own experience that appropriate questions on gender, variations of sex characteristics and sexual orientation are not asked.”

This is a problem in planning the allocation and location of health services.

We have the sense that urban populations have a higher percentage of LGBTIQ+ people, but we don’t know this for sure, explains Haire.

“It could be a factor of discrimination,” she says. “It doesn’t necessarily mean that you don’t have individuals or populations living in rural and remote areas.”

The Census is an opportunity to make these people visible, and to be sure relevant services are made available to them.

“LGBTQ communities are distinct and diverse, [and] within LGBTQ communities there are a range of unique experiences and identities,” saysJack Freestone, manager of AOD (alcohol and other drug) Research and Development at the NSW community health organisation ACON.

“When we do not collect data about sexuality and gender, we miss opportunities to quantify diversity, which compromises the ability to develop essential services that are informed by sufficiently disaggregated data.”

Bath explains that this knowledge is crucial because LBGTIQ+ people experience a range of disproportionate health impacts and sometimes have reduced access to necessary health services.

“There are many health disparities across our communities,” she says, “particularly mental health, suicide, certain cancers, alcohol and other drug use, intimate partner and family violence as well as health issues such as access to gender-affirming care and the health and wellbeing of people with variations of sex characteristics.

“We desperately need data to help us understand these disparities and inform how we respond.”

Freestone says it is important to keep collecting this data to inform the implementation of these services.

“If questions about sexuality and gender are not routinely asked…it is impossible to track service uptake, experiences or outcomes among sexuality- and gender-diverse communities,” he explains. “Without routine data collection of identity markers, we don’t know that LGBTQ people accessing services in Australia are receiving equitable care or experiencing equitable outcomes.”

There is one piece of extra data that the 2021 Census will collect, but it is nearly useless – under ‘sex’, you are now able to choose between male, female and non-binary.

The people writing the survey, Haire says, “really missed the mark, because some people identify as being of a non-binary gender, but non-binary sex doesn’t really make sense. They’re trying to capture people with intersex variations, but that’s not how people with intersex variations generally identify.”

Such misguided questions may not encourage LGBTIQ+ people to answer. Haire says thoughtfully phrased questions are necessary to give people the “sense that they’re being listened to and respected”.

All three researchers point out that one of the most frustrating things is that accurate questions already exist.

“After the time that apparently the Census questions were set in stone, the Australian Bureau of Statistics ran a very sensitive and thoughtful reference group, precisely on these issues,” says Haire.

The result was the publication of the Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables (“2020 Standard”). Updated earlier this year, it builds on the 2016 Standard and introduces new variables to capture different sex characteristics and sexual orientation.

“This was developed to standardise the collection and dissemination of data relating to sex, gender, variations of sex characteristics and sexual orientation,” says Freestone.

But these questions were not included in the 2021 Census.

“It’s a pity that it’s happened too late for the Census to record the data from our communities accurately,” says Haire.

Census director Caroline Deans has told the ABC that several questions relating to gender and sexual orientation were originally shortlisted but ultimately were not included.

Bath says it is vital to continue advocating for the inclusion of these questions in as many data sets as possible.

“We know that there are Commonwealth government health and wellbeing surveys that will include these variables,” she says.

“We need to build on this so we can access better data and also get the broader community used to seeing and being asked these questions, which will help us get them included in the 2026 Census.”

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