Data collection and LGBTQIA+ patients

A colourful collection of numbers in a scattered arrangement.

Data collection and LGBTQIA+ patients

A colourful collection of numbers in a scattered arrangement.

Dr Megan Ross explains how to accurately and sensitively collect data on gender, sex, variations of sex characteristics and sexual orientation in clinical practice.

Maintaining accurate and comprehensive patient records is essential to providing high quality and effective healthcare.

Understanding gender identity, sex, variations of sex characteristics and sexual orientations is crucial to providing safe and inclusive services.

People with LGBTQIA+ identities and experiences are often forced to choose between limited options that do not reflect their identities, which is invalidating and makes accurate data collection challenging.

We will explore best practices for collecting this information in physiotherapy practice, the importance of creating a welcoming environment and strategies for working within more rigid systems that may not recognise diverse identities and experiences.

The first step in understanding how, when and why gender, sex, variations of sex characteristics and sexual orientation are relevant to clinical practice is to understand the differences between these four concepts.

The Australian Bureau of Statistics has developed the Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables (2020) here to standardise the collection and dissemination of data relating to sex, gender, variations of sex characteristics and sexual orientation.

Importantly, this guideline denotes that these are four separate variables and describes each, along with their associated conceptual issues and definitions.

In the context of population-level data, using these four variables in combination with a range of health-related outcomes can provide comprehensive data on health conditions and disparities relevant to gender and/or sexual minority groups.

A lack of consistent data collection for LGBTQIA+ individuals in Australia not only limits population estimates, it also limits understanding of health and wellbeing needs and the development of policy and programs targeted to LGBTQIA+ communities.

For example, the Census is a tool that can provide population-level insights into the cultural, social, health and economic status of Australians.

It is used to inform decision-making and planning, to form policy and to advocate for investment in areas of need.

In 2021, the Census went ahead without including standardised variables on sex, gender, variations of sex characteristics or sexual orientation.

The result was a missed opportunity to collect important data that would facilitate appropriate responses to the health and wellbeing of LGBTQIA+ communities.

In clinical practice:
•    only ask about aspects of identity and experience that are relevant and necessary for management in the clinical context
•    provide options for people to select diverse genders, sexes, variations of sex characteristics and sexual orientations in documentation (where relevant)
•    enable open-ended responses for people to self-identify and the option not to disclose
•    if working within rigid, binary systems, use a ‘notes’ section to correctly document gender identity, sex, variation of sex characteristics and sexual orientation (where relevant)
•    understand when this information may be relevant and practise communication skills so you can ask questions sensitively

•    create a safe and welcoming environment for patients to disclose this information (eg, visible displays of diversity and inclusion)
•    ensure that you can provide patients with information about why this information is being collected and how it will be used
•    be aware of the potential limitations and challenges of collecting this
information, such as patients’ reluctance to disclose and concerns about discrimination and stigma
•    advocate for change if your current system is not adequately meeting the needs of people with diverse
genders, sexual orientations or variations of sex characteristics.

As physiotherapists, we should work to address barriers to disclosure and ensure that our patients feel comfortable and supported when sharing this information, while respecting their right to privacy and confidentiality.

Although in many cases, collecting and using gender information is sufficient and the recommended approach, there may be a legitimate need for information about a person’s sex, variations of sex characteristics and sexual orientation and/or behaviours in physiotherapy.

These data will be used to inform interpersonal interactions (ie, to ensure gender-affirming language for the patient and significant others) and may guide provision of services.

Ensuring that you have sufficient knowledge and understanding of diverse genders, sex, variations of sex characteristics and sexual orientations/behaviours and the skills to sensitively discuss these concepts with your patients is paramount in providing inclusive and safe services for LGBTQIA+ individuals.

For more information, see the Australian Government Guidelines on the Recognition of Sex and Gender here

>> Dr Megan Ross (she/her) is a physiotherapist and postdoctoral research fellow at the University of Queensland and the chair of the APA’s LGBTQIA+ advisory panel.


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