Creating safer and more useful health data systems for sexuality and gender diverse people in Australia.

This report summarises the findings from sociological research on health data systems and the experiences and expectations of gender and sexuality diverse people – including lesbian, gay, bi+, transgender and gender diverse, queer and asexual people (LGBTQA+) – and their health care providers and advocates. We wrote this report for decision-makers, practitioners and LGBTQA+ health and rights advocates to provide them with analyses and insights from the project to inform their work. We hope that the report can be placed into dialogue with key policies and research outputs used to shape healthcare for LGBTQA+ people. Our research can be read as part of the response to the recent backlash against inclusive and rights-based social progress, which aim to diminish the justice and safety for excluded groups. The insights and recommendations herein reflect the needs, views and wishes of LGBTQA+ people and their care providers, but they also illuminate social justice and ethical data practices for all those who face prejudice and discrimination. LGBTQA+ data rights serve all people and societies, and we expect that our research findings will contribute to best practice approaches to inclusion and safety in data systems beyond LGBTQA+ healthcare settings. The project informing this report drew on key informant and community interviews combined with workshops to deepen insights on the interview findings. In the first stage of the project, key informant interviews were conducted with physicians, clinic managers, health data system designers, LGBTQA+ healthcare and rights advocates and other decision makers in Queensland, NSW and Victoria. These interviews ensured that the experiences and needs of care providers and other professionals were incorporated into the research and helped inform the community interviews and workshops. In the second stage of the project, we conducted interviews with LGBTQA+ community members, most of whom lived in Queensland, NSW and Victoria in metropolitan, regional and rural settings. A small number of participants joined the research from the ACT, SA and Tasmania due to social networking. Participants were selected to ensure diverse genders, sexualities and ages and the intersections of those. We were able to document participant experiences of gender affirmation, HIV and sexual health care, alongside other considerations including mental health, neurodiversity, surgery, weight management, pain management, and chronic illnesses such as diabetes. To help synthesise the interview findings and reflect on action pathways, in the third and final stage of the project we conducted workshops with national and local LGBTQA+ health advocates, physicians, decision-makers and community members. The workshops involved presenting selected interview findings to workshop participants to guide deeper discussion to reflect on policy settings and standards of practice for safer and more useful health data. This project was funded in 2023 by the Australian Research Council and led by researchers from the School of Social Sciences at Monash University, the Centre for Social Research in Health at UNSW Sydney, and the School of Public Health at the University of Queensland. The project was assisted by a reference group comprised of individuals from national and state-based community agencies involved in LGBTQA+ healthcare advocacy, research and rights: Health Equity Matters, National Association of People with HIV Australia (NAPWHA), Scarlet Alliance, Queensland Positive People, Queensland Council for LGBTI Health, Positive Life NSW, Living Positive Victoria, ACON and Thorne Harbour Health.