The Importance of SOGI Data Collection

Linked at the button above is One Colorado’s most recent SOGI Data Question Set. This question set was approved by Colorado’s Health Equity Commission to be integrated into public health systems in accordance with HB22-1157. The CDC has also recently aligned with this question set. 

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What is SOGI Data?

SOGI stands for sexual orientation and gender identity. Historically, this data has not been collected in most federal, state, or local systems including by the Federal Census, the CDC, public health systems, and healthcare facilities. In recent years, this is starting to change, but there is still a lot of work to be done!

Why is SOGI data important?

Without data about how many people are in the LGBTQ+ community, the intersections of identities that exist within our community, and what our experiences are, we are largely not represented. Data can help demonstrate a trend or highlight a disparity that exists, which is oftentimes what brings in funding. Funding for the LGBTQ+ community is critical to being able to make change and start to close the gap on the disparities that we know and experience every day.

Here is an example of the different levels of a change that collecting SOGI data can affect in a healthcare setting:

• Micro- Patients can receive whole-person, patient-centered, individualized care without assumptions being made about their identities.
• Meso- Healthcare institutions can understand who they’re serving and create policies and practices to support the LGBTQ+ community.
• Macro- Health disparities and trends can be accurately represented, allowing additional resources and funding can be allocated to address them

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When Data Has Failed Us

We know that quantitative data is not the only or necessarily best way to capture the nuanced experiences of our diverse community, but it has a lot of influence. Much of the data we have informing healthcare has historically been captured by and about white, cis, straight men and generalized to the rest of the population. It has often come from research in academia that has systematically excluded LGBTQ+ people, BIPOC, people with disabilities, and many others. This means much of medical care is based on bodies that do not represent ours.

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BIPOC have had data nonconsensually collected and used for science, which has contributed to a rightful distrust of these systems. Notable examples include Henrietta Lacks and The Tuskegee Syphilis Study. As we collect SOGI data in more places, it’s imperative to hold these truths about the harm data collection has caused and learn about the ways our communities have been excluded and exploited, so that we can make sure we are doing better and protecting each other. Our health matters, and we need to be able to capture it ethically and consensually so that we are no longer left out of research.

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Data Privacy 

Health and identity data is personal and should be honored and protected as such, only collected with informed consent, and only when privacy can be reasonably assured. Therefore, data privacy must be a priority when collecting SOGI data. If this data is not protected, it can be used for discriminatory purposes or even violence. Before beginning SOGI data collection, internal conversations around data privacy during collection and storage must be had, including de-identifying and aggregating data when possible. Chosen privacy techniques should be shared with those from whom the data is being collected. Transparency about data privacy and the way someone’s data is going to be used or not used can build trust and increase comfort in sharing identities.

SOGI data collection should not be used to gatekeep resources or services. It should always be offered as a choice to participate in, or there must be an option to choose not to answer. This ensures an individual’s autonomy over their own personal information and when or with whom they decide to share it.

A phrase you may have heard specifically used around Trans Day of Visibility is- “Visibility without protection is a trap.” To be visible in a world that does not value our safety, and that does not honor our existence, is definitely a risk. The decision to share identities in various ways each day can be a difficult, multifactorial one. We must honor this reality, and prioritize protection. SOGI data is imperative in helping to push the needle forward and making progress for our LGBTQ+ community. 

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