Practitioner narratives on health data management for sexuality and gender diverse people: Benefits, drawbacks, data fixity and the exposure/erasure duality in the clinical encounter

There is fervent support among some for the expansion of data-driven healthcare for improved economic efficiency, patient safety, personalised care and knowledge discovery. Yet, these promises have failed to properly consider the impact of health data in the healthcare for LGBTQ+ people. Uncritical use of health data systems can expose LGBTQ+ people to homo-, trans-, bi-, HIV- and sex worker-phobic prejudice. It may also erase their identities and data needs in ways that compromise their care. Drawing on sociomaterial analysis and in-depth interviews, we consider how providers in Australia manage data in healthcare for LGBTQ+ people. We consider how they managed the benefits and pitfalls of health data systems, including Australia's, My Health Record. Some frustration was expressed with poorly implemented and resourced data systems that were imposed on providers. Inflexible gender coding systems, for example, were reported to harm care rather than support it. Providers indicated that knowledge of sexuality and gender diversity was needed to use data systems safely and usefully. They also suggested that both providers and patients self-organise into queer affirmative clinic settings in ways that have the effect of obviating the problems of exposure and erasure tied to data systems. We discuss how health data policy and healthcare for LGBTQ+ people needs to support providers in their efforts to advance healthcare while accounting for what datafied medicine can and cannot do for them.