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Data collection and LGBTQ+ communities

Collecting, using, and safeguarding LGBTQ+ data in medical settings is essential for delivering equitable, person-centred care. Without accurate data on sexual orientation, gender identity, and intersex status, health services cannot fully understand or address the unique risks, barriers, and outcomes experienced by LGBTQ+ people. This information enables clinicians, researchers, and policymakers to identify disparities, tailor prevention and treatment programs, and track improvements in health equity over time.

Equally important is the safe and respectful handling of this data – ensuring confidentiality, informed consent, and culturally competent processes – so that LGBTQ+ individuals feel trust in the system and confidence that their personal information will be used to improve, not compromise, their care.

 

The below cycle of invisibility diagram illustrates how the absence of inclusive data collection keeps LGBTQ+ populations overlooked in research and services, reinforcing inequities and limiting opportunities to design care that meets their needs.

Diagram adapted from the Cycle of Invisibility resource by LGBTIQ+ Health Australia. Reproduced here with acknowledgement.

Collecting, using and safeguarding LGBTQ+ data.

These resources highlight the role of respectful, consistent data collection in improving equity, addressing disparities, and building trust with LGBTQ+ communities.

In this section you will find practical tools, guidelines, and evidence-based strategies including:

  • Understand how gaps in data collection impacts LGBTQ+ communities.

  • Standardisations and templates for LGBTQ+ data collection

  • Intake form template for collecting gender, sexuality, and intersex status information.

  • Guidance for researchers, clinicians, and policymakers on embedding inclusive data practices.