Women’s health data can misidentify people as females when biological sex, legal classification and gender identity are treated as interchangeable, weakening the evidence used to guide women’s healthcare.
Women’s health policy depends on reliable information about our needs, access to care and outcomes. Governments need to know whether services are reaching women, whether treatments work for us and where disadvantage persists. The usefulness of that evidence depends on how women are identified in the first place, including whether information records biological sex, a legal classification or gender identity.
AAWAA recently met with the Department of Health to discuss reliable sex-based evidence, women’s health requirements and the institutional responsibilities that connect them. Our concern is how distinctions between these categories are maintained throughout research, administration and policy development, so that the information reaching decision-makers supports the conclusions drawn from it.
Factual accuracy requires more than recording an answer correctly: agencies and institutions must also establish that the information collected answers the question they need to examine.
What health information records
A dataset used to compare women’s and men’s health outcomes may contain a field labelled ‘sex’, without making it apparent whether responses describe biological sex, a designation on identity documents or how respondents identify. Where those meanings differ, researchers and policymakers may believe they are analysing female outcomes without knowing whether the category consistently identifies females.
The Australian Bureau of Statistics acknowledges in its Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables that respondents may give a gender response to a sex question because the terms are often used interchangeably. That standard identifies asking about sex recorded at birth as a way to reduce that confusion. The wording of the question, the available responses and the instructions given to respondents therefore form part of the evidence on which subsequent analysis depends.
But reliance on a recognised standard cannot replace examination of those details. Information collected for an administrative purpose may later be used in research, service planning or evaluation, where the distinction between sex and identity has greater significance. Unless the original questions, collection methods and limitations remain available, another institution may use the data without understanding what they can reliably establish about women.
Identity recognition within health policy
The Australian Government Guidelines on the Recognition of Sex and Gender state, “The preferred Australian Government approach is to collect and use gender information. Information regarding sex would ordinarily not be required”. The guidelines also permit sex information to be collected where there is a “legitimate need”, including for services directly related to biological sex.
The issue for women’s health is how that need is understood across the range of evidence government uses. Biological sex is relevant beyond an individual service involving reproductive anatomy. It is also necessary for examining differences in treatment, research participation, barriers to care and patterns of disadvantage affecting females.
Health policy appropriately considers social circumstances, including income, employment, caring responsibilities and experiences of discrimination. Sex and gender identity may also be relevant to a range of enquiries. Recognising those circumstances does not make them substitutes for biological sex, or establish that information collected under one category can answer questions concerning another.
Public institutions make substantive policy choices when they organise information, eligibility, services or communication by sex, legal classification or gender identity. Where the effectiveness of an arrangement depends on identifying females, the choice of category affects its capacity to achieve its purpose. An established inclusion commitment still leaves officials with the responsibility to examine how a particular approach operates and what it means for women and girls.
Including women and identifying women
Women’s participation in research and the retention of usable sex data address connected aspects of the female data gap. Recruiting women is essential, but the value of that participation is diminished if analysis cannot subsequently identify female needs and outcomes. The relevant distinctions need to remain available when findings are reported and used to develop policy.
Descriptions matter too. Research comparing pregnant women with non-pregnant women has a particular population and comparison group. Describing the latter as ‘non-pregnant people’ can imply that the study included a broader population, including males. Such wording can suggest a comparison the research did not make.
In public health communication, the intended audience needs to recognise that information applies to them and understand what action to take. Retaining ‘women’ while adding other descriptions does not, by itself, establish that the combined wording preserves meaning or serves its audience effectively (for example, saying “women and people with a cervix”). Evidence and appropriate testing are needed to assess understanding, including among women whose needs may be overlooked in a campaign designed to include everyone.
A reliable basis for decisions
At the end of the day, our healthcare regulators must be able to assure the public that the arrangements institutions adopt preserve the information needed to understand women’s health requirements. That includes understanding what the data measure, preserving the integrity and consistency of underlying data, recording material limitations, and maintaining responsibility for their appropriate use across institutional boundaries.
One solution to this would be to insert a biological definition of sex in the Sex Discrimination Act as a potential authoritative reference point for other instruments and policies, with deliberate action needed to bring them into alignment. This definition could be used as a governing condition when sex is material to achieving the purposes of the Act. While we wait for that to happen, the Department of Health can assess whether existing definitions, collection practices and communication remain suitable for their purposes. Women need an evidence base capable of identifying our circumstances and supporting decisions that improve our healthcare.