How Forms Can Save Lives: A case study on collecting LGBTQI+ data
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Content warning: This article mentions suicide in a way that may be distressing to some readers.
Filling out forms can often feel like a drag. Whether it’s the Census or a new patient form at the GP, it can seem tedious having to re-write your basic personal information.
So tedious in fact, that it’s easy to forget how sharing that data can actually help us. We live in an age where data increasingly drives influential decisions across health, housing, employment, food access and more. So when it’s collected and stored in the right way, that data has an enormous impact, especially for people in traditionally marginalised groups, like members of the LGBTQI+ community. For example, that personal data might be used to deliver affirming and personalised healthcare for a trans person, or aid the delivery of a service that improves someone’s life.
On the flip side, forms can also be unproductive and even harmful to the people they purport to serve. For example, the exclusion of appropriate gender identity markers on a form could leave a non-binary person feeling excluded or distrustful of the organisation that’s seeking out that information.
It may sound simple, but if we want to build an equal society that provides health, housing and economic equality for all, we must design equitable forms. This is a concept that Amy Paris, a Product Manager at the US Digital Service, is all too familiar with. “Government forms need to represent the identity and respect the privacy of all the people we serve, so that we can better serve them,” she said at the Rosenfeld Design Conference. “It’s the basic design principle that you want to be as inclusive as possible.”
Paris has followed this principal to revamp how the US government understands and serves LGBTQI+ communities. Through her quiet agitation and persistence, she pushed for the Census Bureau to start asking folks about their sexual orientation and gender identity (SOGI) in the Household Pulse Survey last year. This is a boon for both recognition and service delivery. Paris acknowledged, too, that the US still has a long way to go on collecting SOGI data. “This is a large percentage of the population and right now they’re not being represented in federal forms,” Paris said.
We could certainly take a leaf out of her book here in Australia, where there’s an alarming lack of data on LGBTQI+ communities. The 2021 Census didn’t even ask Australians about their gender identity, sexual orientation or variations of sex characteristics. (This omission is especially alarming given that LGBTQI+ communities have the highest suicide rate of any group in Australia.) To some extent, this total lack of recognition implied that LGBTQI+ folks were not a priority for the government. It’s a good example of what not to do when collecting peoples’ personal information to inform service delivery.
So, how should organisations go about collecting personal data to advance equality? And how can they design equitable forms for all?
First, do no harm
Paris said it’s important to prioritise harm prevention when collecting sensitive personal data. How can one do this? First, organisations need to be careful about how they use, share and store personal data. “It might do harm if you’re just collecting that data for the sake of it, and leaving it laying around where it could be found in a data breach,” Paris said. Second, there needs to be a valid reason for collecting it in the first place. “If you’re asking people [about] their gender identity, why are you asking? What purpose does it serve? Are you improving program [or service] delivery?” These questions should be front of mind when designing equitable forms – not just for LGBTQI+ people but for everyone.
Design with people, not for them
The concept ‘nothing about without us’ rings true when you’re designing more inclusive forms. Paris said that organisations should consult people at every intersection of a community, as well as those beyond it. “No community is a monolith,” she said. “That community speaks with multiple voices… You can’t just talk to one LGBTQ person, or one community group, and assume that… they’re all gonna have the same perspective.”
Ensure transparency and understanding
It’s not uncommon for people to distrust a request for their personal information, and this can be especially true of marginalised groups. As Paris pointed out, LGBTQI+ folks in the US have a reason to distrust the government, which has long refused to recognise them. The same applies for Australia’s LGBTQI+ communities, where there is a level of distrust and fear of the government and health services. (It’s not unfounded: up until the 1970s homosexuality was considered a mental disorder, and for decades intersex folks have been coerced into ‘sex normalisation procedures’ by the Australian medical system.) For these reasons, it’s important that subjects feel respected, understood, safe, and have a sense of trust when they’re being asked for information.
Consistency is key
Paris also emphasised the importance of a whole-of-organisation approach, by way of consistency across forms. “Folks don’t want to have to put in different information for agencies… like Medicare… or my passport…” she said. This is particularly important among LGBTQI+ communities to avoid dead-gendering, dead-naming, and further deterioration of trust.
Adapt and be agile
Finally, Paris acknowledged that no question or form will be perfect on the first go. Talking about the recent changes to the Household Pulse Survey, she said, “These questions are not perfect. I can guarantee you there are members of the community who are not thrilled with the questions. But it’s the first time that a major statistical survey for this purpose has ever asked these questions.”
Indeed, trial and error is a natural part of the process. Paris suggested piloting certain questions and methods, testing them with users, seeing their reactions and evolving the approach over time. This way we can design forms that will incrementally improve service delivery and social equality.
Words by Holly Bodeker-Smith.
