How You Can Help Improve LGBTQIA+ Health Care & Keep Our Health Data Safe

Why health data storage is an important LGBTQIA+ issue

Ensuring our health data is kept safe is a particularly significant issue for LGBTQIA+ people.

Our community has higher-than-average rates of various health issues, including mental illness and chronic illness. So for queer people, particularly those of us with complex health issues, keeping this data secure is important.聽

Not to mention that many of the health conditions and treatments that are prevalent in the LGBTQIA+ community 鈥� for example, mental health conditions,聽 HIV or even being on PrEP 鈥� sadly still face strong and enduring stigma. So if a member of our community鈥檚 healthcare information is leaked, they could face serious discrimination or harm.

And if the LGBTQIA+ community does share widespread concern about the privacy of our sensitive health data and risk of stigmatisation, it could lead to queer people choosing to withhold or downplay information about their health when they seek help 鈥� or even decide not seek help and support at all.

New research project aims to improve LGBTQIA+ data storage

A new research project is aiming to change this; to make data storage safer, and improve the LGBTQIA+ community鈥檚 confidence with seeking help with their health and their information being safe.

鈥淗ealth data is about human rights,鈥� explains Dr Mark Davis, Professor of Medical Sociology at Monash University and organiser of the project. 鈥淭he saying ‘nothing about us without us’ means that the collection and use of health data needs to serve communities in ways that reflect their lived experiences, and represent them accurately so that their choices and options for healthcare are optimised.鈥�

Davis has worked in the LGBTQIA+ health space for many years, contributing to research about HIV prevention and drug resistance for LGBTQIA+ people. 鈥淢y PhD was on the impact of the then new HIV treatments on gay men living with HIV in London. Before that I worked in community settings on HIV prevention,鈥� he says.聽鈥淚 am really committed to queer health in my own research and this new project on health data is an expression of that.鈥�

Funded by the Australian Research Council and conducted at Monash University, UNSW and University of Queensland, the new project is vital for individual healthcare and the queer community.聽

鈥淯nder-served groups – including LGBTQIA+ people – might miss out on these benefits if data is not collected accurately or if people avoid sharing information if they worry that their data will be misused or attract prejudice.聽

Davis also explains that insecure and mismanaged health data affects the LGBTQIA+ community in a lot of different ways. In addition to queer people possibly feeling cautious about sharing their health information, it also means health providers might lack confidence or be uncertain about how to engage with LGBTQIA+ people and make them feel comfortable 鈥� and this would make the issue significantly worse.聽

How you can help contribute to keeping LGBTQIA+ health data safe

Now, Davis is asking for LGBTQIA+ people to contribute to the research project. These conversations and contributions can help to make enormous changes toward improving LGBTQIA+ health.聽

鈥淲e are speaking with members of the LGBTQIA+ community about their experiences of providing and using health data,鈥� he said. 鈥淲e want to know how data collection could be enhanced and improved.鈥�

“We are hoping that the project will help policy-makers, clinicians and advocates to understand how to improve the value of health data for queer communities and to also ensure that data is protected from misuse,鈥� says Davis.聽聽

If you would like to contribute to or learn more about the new research on data storage and help to improve LGBTQIA+ healthcare, you .