Throughout 2021, ARPHAI advanced a series of meetings and workshops to work on the de-binarization of the national electronic health record system (known as Historia de Salud Integrada or HSI) that initially included a binary classification of gender identity. To undertake this work, the project team had enormous support from La Dirección de Sistemas de Información del Ministerio de Salud de la Nación (the directorate of information systems in the country’s ministry of health), which is also a member of ARPHAI’s project team.
The de-binarization initiative is intended to improve adaptation to the country’s gender identity law, La Ley de Identidad de Género de la República Argentina. Passed in May 2012, this law requires all citizens to be treated according to their chosen gender identity. For this purpose, various initiatives were carried out.
First, public management officials from various levels were convened for this particular workstream, including from:
In the meetings held, the key requirements of Historia de Salud Integrada were discussed in terms of people’s unnique identification; the problems and alternatives that could arise from proposals to expand gender identity categories, and other sex-generic variables; and the limitations and challenges with the implementation of related data gathering tools within territories at the administrative level, among others.
Prior to these meetings, ARPHAI also engaged with specialists from public and private institutions who are pioneers involved in the implementation of electronic medical records in the country (such as el Hospital Italiano de Buenos Aires and el Gobierno de la Ciudad de Buenos Aires), and are also in the process of adapting their developments to the current regulatory framework. These meetings provided key inputs for the activities of this workstream.
As part of ARPHAI's push to prioritize these issues and the work with other public management practitioners, the current version of Historia de Salud Integrada already considers an expansion of the de-binarized “gender identity” field (seen here); and other requested changes are scheduled, such as showing gender identity and self-perceived name instead of sex and names based on national IDs.
At the same time, ARPHAI is working on proposing a set of guidelines on related data collection with territories, since it is essential to have quality data that can enhance the implementation of the new de-binarized HSI system.
Although this expansion is taking place under the current context, where certain issues remain in terms of promoting the value of gender data for the benefit of different communities and maintaining the fluidity (de-categorization) of gender identity -- defined as a “personal experience” by Argentine law -- it was a step towards improving the tool that we hope to review together with other actors linked to the communities and the particular issue.
Likewise, ARPHAI will endeavor to work on national health information records that are related to, or are dependent on, electronic medical record systems. In the future, this will allow the development of fairer algorithms in terms of reducing biases and the design of better tools with data from the HSI system.
To that end, discussions that have started in the workstream are not only intended to adapt to the HCE data model, but also to advance the de-pathologization of LGBT + identities in clinical terminology standards such as SNOMED-CT, as well as the debinarization of other components of the HSI system associated with gender identity. For this goal, the plan is to incorporate other stakeholders into the discussions, particularly non-governmental entities linked to the LGBT + community and those working with data through a gender perspective.
The above is an English translation of the original piece in Spanish which can be read here.Tags: #GenderData, #Covid19, #ElectronicHealthRecord