So, I recently had one of my worst fears realised: someone called a survey of mine racist.

Now for any survey creator or anyone whose work is shared publicly, in terms of social crimes, when you’re criticised of offending or excluding members of society, it doesn’t get much worse than that.

For some, asking others about demographic information isn’t the most fun thing to do. Which means some often shy away from asking questions about sex, gender identity or ethnicity out of a fear of saying the wrong thing, using the wrong term, or in my case, offending someone quite profoundly because of the use of one option alongside another. But that happens, and it only helps you get a better understanding of your cohort (in our case, patients) further down the line.

At Cemplicity, we embrace ongoing learning, prioritise cultural humility and understand that word choice preferences and language continue to evolve from year to year. We also appreciate that it’s equally important to recognise that when asking any questions about ethnicity or gender identity that our understanding of preferred terms and language is well-informed.

So, how did I go about solving my problem, and what should you do if you’re trying to do the same? Simple. I used a straightforward three-step process, and you can do the same.

  1. Don’t let complacency win – Stay up to date with emerging trends.
  2. Listen to the experts – find inspiration and guidance from excellent sources provided by your national agencies and advocacy groups, like the Human Rights Commission.
  3. Be unafraid to be wrong and learn.

Why this all matters

Some often say that we’re in an era of growing ethnic diversity; others like me would argue that has always been the case. The only difference now is that previously marginalised members of our society finally have a voice. And it is louder than it has ever been before.

LGBTTQIA+ and ethnic communities have historically been excluded from data collection, hiding and often worsening disparities. Inclusive, appropriately worded survey questions are the first step to normalising the diversity of sexual and gender identities and collecting data that can effectively inform critical programs and services [1].

From a research perspective, embracing the full diversity of survey respondents and capturing demographic information is immensely valuable and allows researchers to understand a community better and respond to its needs. Ultimately, this data is crucial to support the development of culturally appropriate interventions and improvements in community health aimed at addressing health equity.

Within healthcare, research has shown that culturally competent health care service delivery can improve health outcomes, increase the efficiency of clinical staff, and ultimately, result in greater patient experience and satisfaction [2]. All these reasons and more, make our decision to measure gender identity and ethnicity even more important than ever before.

If you’re still unsure, I’d suggest checking out this awesome infographic by Statistics New Zealand [3]. They’ve put together a guide to determining if and how to collect sex and gender data, which I think makes an excellent decision tree.

Re-learning how to measure Gender Identity and Ethnicity in New Zealand

Finding the right way to ask questions in New Zealand is easy. Statistics New Zealand (Stats NZ) is the agency responsible for collecting official statistics in Aotearoa. It regularly publishes guidances on gender identity, ethnicity, and a variety of other socio-economic topics.

Gender Identity

New Zealand is a country where LGBTTIQA+ community and human rights institutions’ advocacy has resulted in significant legal reform and progressive milestone policies starting in the late 1980s. This advancement toward equality has been most noticeable in our continued pursuit to better measure the diversity and complexity of New Zealanders, starting with the development of the first Statistical Standard for Gender Identity back in 1995. In the years since, this standard, along with the Statistical Standard for Sex, has undergone numerous reviews through public consultations aimed at addressing its inability to adequately reflect gender minorities and intersex people [4].

The most recent consultation, which closed to the public only just last month (August 2020), proposed changes to both the standards for sex and gender identity. These changes acknowledged that the existing concept of gender identity was too narrow and would inadvertently discriminate against members of the transgender community [5]. It also highlighted that the previous ‘gender diverse’ term while being a useful umbrella term, was confusing to some people, often open to misinterpretation, and used infrequently be transgender people to describe their own gender [6]. The final change proposed was the use of ‘another gender’ as the category respondents could use as opposed to ‘gender diverse’. This change aims to avoid using a term that may not be a good fit for some respondents and avoid the previous confusion caused by the use of ‘gender diverse’.

In short, Stats NZ has proposed two options. One for those that have the resource to code written responses and another for those that can’t.

  1. What is your gender?
    • Male
    • Female
    • Another gender (please specify): _______

For collections with limited ability to process text responses:

  1. What is your gender?
    • Male
    • Female
    • Another gender

Ethnicity

We’re all aware that information collected on ethnicity is used widely by organisations, authorities, and government agencies to inform and evaluate public policies and services [7]. And numerous studies have shown substantial ethnic disparities in patient experience exist in national healthcare systems in NZ, Australia and abroad [8].

Much like gender identity, growing and evolving needs in the community required a similar public consultation to address the Ethnicity New Zealand Statistical Standard Classification of 2005. Unsurprisingly, the general feedback was diverse. Submitters highlighted issues with the existing definition of ethnicity, poor representation of entire groups, questioned why the use of the NZ label appeared to be exclusive to only one option (i.e. NZ European) and spoke strongly against the ongoing problem with the continued use of the ‘Other’ category option [9]. This latter point resonates particularly strongly with me as I regard myself as an NZ South African. Yet, there’s no capacity to call myself a New Zealander, and while some forms do have South African as an option, others often don’t, which makes it hard to understand why South African is separate from African and which category I truly belong.

These shortcomings and others raised by members of the public means that the review process is far from over and requires even more public engagement and innovative thinking to develop ethnicity classifications which are truly reflective of our national reality. Until these problems can be resolved, it is safe to continue using the existing classifications.

Fixing my original problem

Armed with my newfound appreciation of both gender identity and ethnicity in NZ, I returned to face my problem in Australia and applied the same thought process.

Australia already has extensive resources which providing guidelines on the recognition of Sex, Gender, Cultural and Ethnic groups [10]. There’s also an excellent review of the different ways race and ethnicity have been measured and challenged in the censuses of Australia, Canada, and the United States over the last half-century by Stevens, Ishizawa and Grbic (2015) which demonstrates the challenges with meeting the evolving needs of their respective societies that I would highly recommend.

However, my particular problem stemmed from a respondent that suggested that the way the current ethnicity question was formatted was racist. Despite being multi-choice, the respondent felt that indicating that they were Aboriginal meant that they could not also be Australian through the wording of our ethnicity question; this was not our intent, but it was still a problem, nonetheless.

As this required a more nuanced response, I started by reaching out directly to the Sydney office of the Centre of Excellence for Aboriginal and Torres Strait Islander Statistics at the Australian Bureau of Statistics (ABS) for help. After hearing about our work and my current struggles, the Centre provided me with the 2016 Census form, detailed instructions about how to ask individuals to identify themselves as Aboriginal or Torres Strait Islander, all statistics ABS have for Aboriginal and Torres Strait Islander People, and a detailed study into the Centre’s work into the development of the question in recent years [11].

Finally, after completing my research and consulting with local experts, I was ready, and I set out to make the necessary improvements to every survey that reaches someone in Australia.

Conclusion

As it turns out, despite going through all of the above, my journey wasn’t over. It wasn’t until the final paragraph in the Centre’s email to me that I was reminded of something which I did during our discussions without even realising. After using the same term several times, I used the acronym ATSI for brevity, which is considered offensive and inappropriate at all times.

This served as my most important lesson and my final point. Even with all that I had learnt, all that I had done to consult with experts, I still forgot that the pursuit to be inclusive needs to extend beyond the surveys and messages we create. It needs to be considered when we talk or write about our different LGBTTQIA+ or ethnic communities, and most importantly, we need to realise that despite our perceived best efforts, there are always opportunities for us to learn and do even better.

[1] New Zealand Human Rights Commission (2020). PRISM: Human Rights issues relating to Sexual Orientation, Gender Identity and Expression, and Sex Characteristics (SOGIESC) in Aotearoa New Zealand – A report with recommendations. Retrieved at https://www.hrc.co.nz/files/9215/9253/7296/HRC_PRISM_SOGIESC_Report_June_2020_FINAL.pdf; Stevens, G., Ishizawa, H., Grbic, D. (2015). Measuring race and ethnicity in the censuses of Australia, Canada, and the United States: Parallels and paradoxes. Canadian studies in population 42(12):13-34. Retrieved from https://www.researchgate.net/publication/273754946_Measuring_race_and_ethnicity_in_the_censuses_of_Australia_Canada_and_the_United_States_Parallels_and_paradoxes[2] White, J., Plompen, T., Tao, L. et al. What is needed in culturally competent healthcare systems? A qualitative exploration of culturally diverse patients and professional interpreters in an Australian healthcare setting. BMC Public Health 19, 1096 (2019). https://doi.org/10.1186/s12889-019-7378-9[3] Statistics New Zealand (2020). Sex and gender identity statistical standards: Consultation. Retrieved from https://www.stats.govt.nz/consultations/sex-and-gender-identity-statistical-standards-consultation#download[4] Pega F, Reisner SL, Sell RL, Veale JF. Transgender Health: New Zealand’s Innovative Statistical Standard for Gender Identity. Am J Public Health. 2017;107(2):217-221. doi:10.2105/AJPH.2016.303465[5] Pega F, Reisner SL, Sell RL, Veale JF. Transgender Health: New Zealand’s Innovative Statistical Standard for Gender Identity. Am J Public Health. 2017;107(2):217-221. doi:10.2105/AJPH.2016.303465; Statistics New Zealand (2020). Sex and gender identity statistical standards: Consultation. Retrieved from https://www.stats.govt.nz/consultations/sex-and-gender-identity-statistical-standards-consultation#download[6] Veale J, Byrne J, Tan K, Guy S, Yee A, Nopera T & Bentham R (2019) Counting Ourselves: The health and wellbeing of trans and non-binary people in Aotearoa New Zealand. Transgender Health Research Lab, University of Waikato: Hamilton NZ. Retrieved from https://countingourselves.nz/[7] Statistics New Zealand (2020). Ethnicity standard classification: Findings from public consultation November 2019. Retrieved from https://www.stats.govt.nz/consultations/ethnicity-standard-classification-findings-from-public-consultation-november-2019[8] Rumball-Smith, J., Sarfati, D., Hider, P., Blakely, T., Ethnic disparities in the quality of hospital care in New Zealand, as measured by 30-day rate of unplanned readmission/death, International Journal for Quality in Health Care, Volume 25, Issue 3, July 2013, Pages 248–254, Retrieved from https://doi.org/10.1093/intqhc/mzt012[9] Statistics New Zealand (2020). Ethnicity standard classification: Findings from public consultation November 2019. Retrieved from https://www.stats.govt.nz/consultations/ethnicity-standard-classification-findings-from-public-consultation-november-2019[10] Australian Government (2013). Australian Government Guidelines on the Recognition of Sex and Gender. Retrieved from https://www.ag.gov.au/sites/default/files/2020-03/AustralianGovernmentGuidelinesontheRecognitionofSexandGender.pdf[11] Australian Bureau of Statistics (2019). Australian Standard Classification of Cultural and Ethnic Groups (ASCCEG), 2019. Retrieved from https://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/1249.0Main%20Features412019?opendocument&tabname=Summary&prodno=1249.0&issue=2019&num=&view= ; Australian Bureau of Statistics (2020). Aboriginal and Torres Strait Islander Peoples. Retrieved from https://www.abs.gov.au/Aboriginal-and-Torres-Strait-Islander-Peoples ; Australian Bureau of Statistics (2020). 1200.0.55.008 – Indigenous Status Standard, 2014, Version 1.5. Retrieved from https://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/1200.0.55.008[12] Stevens, G., Ishizawa, H., Grbic, D. (2015). Measuring race and ethnicity in the censuses of Australia, Canada, and the United States: Parallels and paradoxes. Canadian studies in population 42(12):13-34. Retrieved from https://www.researchgate.net/publication/273754946_Measuring_race_and_ethnicity_in_the_censuses_of_Australia_Canada_and_the_United_States_Parallels_and_paradoxes