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Effective and inclusive data collection will enable better health outcomes in the LGBTIQA+ community

Introduction by Croakey: The barriers and complexities of collecting data about LGBTIQA+ communities are no excuse for inaction, according to Joe Ball, CEO of Switchboard Victoria.

Below, Ball discusses some of the challenges associated with data collection in the LGBTIQA+ community, while also emphasising the importance of getting it right.

“Effective data collection will allow us to target areas of most need within cohorts of location, age, ethnicity, social economic, gender and disability,” he says, adding that this could mean through targeted communications and/or outreach programs.


Joe Ball writes:

Since 1991 Switchboard Victoria has been listening to the voices of LGBTIQA+ communities across Victoria. Every day on our helplines we hear from people in our communities on some of the worst days of their lives.

Through our lived experience advisory groups we hear about the desperate need for systematic change for people in our communities. Through our Older Peoples visiting program we hear from our older community about lifetimes of connections and disconnections.

Through all facets of our work, people share with us their experiences in coming out, the lives, and pains of those they love, grief and loss, relationship make-ups and break-ups and the struggles for recognition, respect, equality and inclusion in our homes, streets, workplaces and communities.

As the CEO of Switchboard Victoria, I am honoured to have led this organisation since 2016. During this time, I have seen the passing of Marriage Equality, birth certificate reform for Transgender people and greater extension of equality for all in our LGBTIQA+ communities.

Despite these significant milestones, LGBTIQA+ people in Australia still have some of the poorest health and wellbeing outcomes and are victims of violence and experience discrimination more than the general population. For this to improve we need evidence-based and data-informed solutions and services.

Informing data solutions

The project of data collection needs to reflect our communities today as well as over time through intelligible longitudinal data collection. Tracking LGBTIQA+ communities through data is, perhaps, one of the most challenging longitudinal data collection cohorts to track.

My own life and experiences provide good insights into this. Over the past 42 years I have identified as a woman, bisexual, non-binary, Trans Man, Man, cisgendered, transgender, gender diverse, Queer and bisexual. And my experience is not unique.

These shifts in identities and terminologies pose challenges for data collection. Words replace each other, words change meaning as they expand and evolve for each generation.

For example, prior to the 1990s the word “queer” was largely understood as a pejorative and a street slur – today it describes a proud identity, an umbrella term and even a social movement.

To solve these puzzles for demographers it has been posed that we should focus on activity rather than identity. For example, men who have sex with men, rather than gay men. However, this framing makes most sense when talking about sexual and reproductive health but is quite limiting when applied to mental health and wellbeing.

The barriers and complexities around data collection in our community should not be an excuse for inaction.

What’s required is strategic compromises and consistency of collection and engagement.

One example of this might be to settle on a limited offering of gender data boxes, for example male, female, nonbinary, transgender man, transgender woman. This is only meant to be demonstrative, not meant to be taken as direct advice on the gender data collection question.

The larger the sample size and the longer the data is collected, the more the question of strategic compromise will come into play. This is most pressing in the Census, which has been asking the gender/sex question since 1911.

Gender, sex and sexuality in the Census

The current Federal Government has made a commitment to improve the gender, sex and sexuality questions in the 2026 Census.

I had the pleasure of working for the Australian Bureau of Statistics (ABS) on the 2011 and 2016 Census. During this time, when asked about expanding the Census questions for LGBTIQA+ people, a senior executive disparagingly replied “everyone thinks that the Census is here to give you a big hug, it’s not, it’s about getting a clear accurate picture of Australia”.

This sentiment was made after NSW Birth registry had facilitated Norrie May Welby to identify as ‘non specified’ for their gender marker on their birth certificate and passport following a successful court challenge in 2014.

Today, as in 2011, attempts to exclude nonbinary gender identities in data collection actually mean those data sets are legally inaccurate and fail to capture a clear and accurate picture of Australia.

It wasn’t then, and it isn’t asking ‘for a big hug’ now to have our identities reflected correctly in data sets – it’s about data integrity.

The Census fundamentally plays two important data roles.

Firstly, it creates baseline data sets that all other data sets can be measured against to ensure representation is measured accurately. Secondly, it shows location-based data sets.

Until the Census accurately captures LGBTIQA+ communities, we do not have a baseline to measure the efficacy of data we are collecting anywhere in Australia and we also fail to see how our communities differ from suburb, to city, to regional centres to rural communities.

Future options

The 2017 Victorian population survey broke new ground in LGBTIQA+ data collection. I believe the process that went into developing the survey is worth reflecting on, including who advised on what data sets – including the inclusion of a LGBTIQA+ advisory group – and what were its strengths and weaknesses.

This was a sample survey which is particularly useful because it differs from most other surveys involving LGBTIQA+ communities where data is collected through an opt-in self-selection process, meaning that who gets sampled is who answers the questions. Whereas a sample survey is a form of data collection where a more rigorous representation is sought of the total target population.

For example, if the standard of women in Australia is 52 percent based on birth records, then the survey could use this as the number of women who must be surveyed for it to be representative of women. Whereas the Census seeks to count all people living in Australia on one night.

Since 2011 the ABS has allowed a process, although convoluted and inaccessible, to record your gender as ‘other’ than male/female. A lesser understood fact about this type of data collection on gender markers is that the question asks, ‘male/female/other‘ where ‘other’ is a free text field which means that people can write in their identities.

I believe that the free text field provides a transitional option we can use until we can collectively decide, through co-design with LGBTIQA+ communities, what longitudinal data sets for our communities can look like.

It also allows both a grouping of non-specified, non-binary and other than male/female identities without settling on a term that remains unsettled within the community we are seeking to capture.

Importantly it also allows for specific cultural references to transgender and gender diverse people like Brother Boys and Sister Girls for transgender First Nations peoples.

It important to note that Intersex communities need their own data collection strategy and peak bodies like Intersex Human Rights Australia are keen to be involved and consulted with.

Data collection that seeks to grapple with complexity of our communities, even if this requires some compromises for longitudinal collection, will allow organisations like Switchboard to better address the needs of our communities.

We know we have a long way to go to change and improve the lives of LGBTIQA+ people in our communities.

Effective data collection will allow us to target areas of most need within cohorts of location, age, ethnicity, social economic, gender and disability. In a practical sense this could look like targeted communications and outreach.

Longitudinal data will ensure that we are measuring whether organisations, governments, policy makers and communities are making a difference.

The time for wringing our hands and saying ‘it is all too hard’ or ‘it’s nice to have (a hug)’ are over.

How we collect data is highly political because each data point is a life and when we input data incorrectly, we fail to make people visible within the systems they rely on and need to be working for them.

About the author and Switchboard

Joe Ball is CEO of Switchboard Victoria, a community-based not for profit organisation that provides a peer-driven support service for lesbian, gay, bisexual, transgender and gender diverse, intersex, queer, asexual (LGBTIQA+) communities and their allies, friends, support workers and families.

Some of the services they provide include seven-day-a-week LGBTIQA+ helplines – Qlife run in partnership with other state-based services, and Rainbow Door which is a Victorian LGBTIQA+ helpline for the prevention of suicide, family violence and to support mental health and wellbeing.

Switchboard also runs the only dedicated national LGBTIQA+ suicide prevention program.


See Croakey’s archive of articles on LGBTIQA+ health matters.

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