Who gets to categorise people? How does self determination coexist with out-group labelling?

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First time starting a conversation here, so please let me know anything I can improve upon, or better areas of the forum to post this!

My interest in digital health comes from our health system’s shortcomings around primary healthcare experiences of transgender adults (either routine healthcare or medical transition services). I found this study interesting, where they used electronic healthcare records and ICD codes to establish if a patient was transgender or not. “The objective of this study was to determine the extent to which patients’ clinician notes in EMR contained transgender-related terms that could corroborate ICD-coded transgender identity.”

Journal of the American Medical Informatics Association , Volume 25, Issue 7, July 2018, Pages 905–908, doi: 10.1093/jamia/ocy022

It has me wondering, if we had fully digital medical records in Aotearoa New Zealand: Is it ethical to use algorithms/categorisation shortcuts to ‘name’ people part of a group? How does that relate to autonomy and self-determination? If this sort of thing was possible, and done with the communities (data sovereignty) would that change your answer?

These musings are not specific to transgender people, but perhaps relevant to many socially marginalised people/populations, who are at risk of being ‘studied’ by out-group researchers.

An attempt to provide context: The USA has four of the main forms of healthcare systems implemented, each for different populations. Veteran Affairs is the only form of universal healthcare provided in the US, and it is only accessible to past military service members (it is also under resourced and has inordinately long waitlists). Their data set is often used for digital informatics because it is more cohesive than the various privatised entities, but the population is not representative of the whole of the US.

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Such a crucial topic we need to figure out. . . . Without the structured data to identify groups, we cannot identify the existence, and extent, of unfair differences between groups. In research, ensuring data collection includes self identified ethnicity and gender is a way to ensure the ethical collection of information. However, equally crucial is who and how this data is analysed, to ensure strength-based understanding… . . Perhaps in our new digital health national strategy, there can be safe-guards in place, so any data analysis about a particular population can only be ‘used’ by that group??? We are fortunate to have alot of world-leading thinkers around data sovreignty here. . . led by Maori data sovreignty groups. . . This gives me hope we can get this right. . …

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I feel incredibly privileged to have the option of learning from people working in indigenous data sovereignty, for sure. I would be very happy to have that as a template for many other aspects of data rights and ownership. It is one of the things I am most keen to learn about re: local digital health work.

I feel like a majority of US transgender health research is opportunistic and uses whatever data sets are available, rather than here, where we are actually starting to have our own data sets, driven by trans researchers ourselves. Perhaps the luxury of being a small country?

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