Centring racial equity throughout the data life cycle
“Racial equity is all about sharing power. We want to share power with people who have had it historically taken away. And this is just the building blocks of trying to get to it.” This is how Isabel Algrant describes her work at Actionable Intelligence for Social Policy (AISP), where she helps communities create data infrastructure to promote racial equity. “It’s the idea that we can co-create data infrastructure to promote racial equity in the public interest and the public good, instead of investing in infrastructure that just keeps things as they are now disparate and stratified.”
Algrant is the Assistant Director of Training and Technical Assistance at AISP, based at the University of Pennsylvania, where she supports sustainable data governance that includes marginalized community voices. Algrant spoke alongside Dr. Amy Hawn Nelson, Director of Training & Technical Assistance at AISP, at HDRN Canada’s Big IDEAs About Health Data Speaker Series. The pair explored key themes animating their collaborative project to centre racial equity within the data life cycle, from planning and collection to access and use of algorithms.
“We can co-create data infrastructure to promote racial equity in the public interest and the public good, instead of investing in infrastructure that just keeps things as they are now disparate and stratified.” ~ Isabel Algrant
While data sharing and integration can be used to understand community needs, improve services, and build stronger communities, when misused, data can reinforce racist policies, producing inequities in resource allocation and access. “Much like the large infrastructure projects of the 19th century being railroads and the 20th century being highways, data infrastructure is the big infrastructure project of our generation, of our century,” Algrant explained. “As highways and railroads were able to both decimate and develop communities, data infrastructure can do the same thing.” To meet this challenge, Algrant and Dr. Hawn Nelson led a collaborative process to create A Toolkit for Centering Racial Equity Throughout Data Integration.
Since its launch in 2020, the toolkit has been used by hundreds of organizations seeking to address the harms and bias baked into data, data infrastructure and government data practices. “We are singularly focused on ethical use of data by state and local governments in the US, and in our context, we explicitly focus on racial equity,” said Dr. Hawn Nelson. The toolkit builds on a definition of racial equity as a process of eliminating racial disparities and improving outcomes for everyone: “It’s the intentional and continual practice of changing policies, practices, systems and structures by prioritizing measurable change in the lives of Black, Indigenous and people of colour.”
The toolkit was a participatory action research project involving hundreds of participants over nearly a decade. The 2025 update features 50 new examples from across the data lifecycle, adding strategies for collecting and disaggregating data on race, ethnicity, language,disability, sexual orientation and gender identity; working with Tribal data, and mitigating risk related to algorithms and artificial intelligence.
“All data access and use involves benefit and risk,” stated Dr. Hawn Nelson, which is why the toolkit asks four guiding questions. The first question establishes legal authority while the second queries the ethical boundaries of the proposed data use or access. The last two questions get at more practical considerations: “Is this a good idea?” and “Who decides?” In all of this, Dr. Hawn Nelson stressed the importance of collaborative decision making. ”If you’re not having conversations about data access and use, you’re not talking about data governance. Data governance involves people, policies and procedures that govern how data are used. And you have to do that in conversation and in relationship.” To that end, the toolkit describes positive and problematic practices for centring racial equity across the stages of the data life cycle, offering examples of how communities have built strong foundations for community engagement.
To learn more about centring racial equity in the data life cycle, watch the recording of Dr. Amy Hawn Nelson and Isabel Algrant’s Big IDEAs About Health Data presentation and check out the interactive Centering Racial Equity Throughout Data Integration toolkit.