Disaggregation Nation! Convening our Community of Data Equity Advocates

By Amy Vertal

High quality disaggregated data are critical to advancing equity across sectors, including health and health care. Aggregated data conceal inequalities by obscuring differences between smaller subgroups within larger categories and make it more difficult to address these disparities. As the COVID-19 pandemic made clear, inequalities in health care and health outcomes between different racial and ethnic subgroups are often masked within larger categories (Black, Asian, Hispanic, etc.). Health and health care data that are disaggregated by race and ethnicity can not only inform policy to ultimately reduce health disparities, but they can also help federal, state, and local governments to tailor programs and more effectively target limited resources.

To advance the disaggregation of health and health care data by race and ethnicity, The Leadership Conference Education Fund launched its Data Disaggregation Action Network (D-DAN) in the summer of 2023. Our state and national D-DAN partners work to advance federal and state policies as they relate to disaggregation of health data by race and ethnicity through the engagement and empowerment of communities. Through the creation of a state and national advocacy infrastructure to engage stakeholders, policymakers, and communities on the need for disaggregated data, D-DAN works to improve data quality and accessibility in order to better understand disparities and achieve racial equity. In addition to grant funding, The Education Fund provides D-DAN partners with resources, technical assistance, and an infrastructure to connect and build relationships with other organizations engaged in data disaggregation education and advocacy.

On October 24, to cap the first year of our grantees’ work with D-DAN and launch into year two, we convened our 13 state and seven national partners in Washington, D.C., for Disaggregation Nation! A Data Equity Summit. This convening aimed not only to build attendees’ knowledge and practical skills around data disaggregation policy, advocacy, and implementation, but also to create space for partners to learn about work happening across the nation — including at the state level — and to build relationships with one another. And what better location for a convening on the need for improved race and ethnicity data than The Madison Hotel, named for James Madison — who as early as 1790 advocated that the collection of census data be “…extended so as to embrace some other objects besides the bare enumeration of the inhabitants; [enabling policymakers] to adapt the public measures to the particular circumstances of the community…”

The summit featured panels on navigating state data systems, strategies to drive the implementation of data disaggregation policy, tools and tactics for effective messaging on the need for race and ethnicity data, administrative advocacy techniques, data privacy considerations, and approaches to building data literacy in communities. We set this agenda based on input from our D-DAN partners, who revealed these topics as critical areas of focus and opportunities to strengthen their work. By bringing in speakers both from our state and national D-DAN partner organizations, as well as external organizations and representatives of state governments engaged in data equity work, we sought to balance a focus on our D-DAN target states with opportunities to learn from work going on in other states. Participants also received resources related to many of the panel topics, including an Organizing Toolkit for Data Equity and an advance copy of a forthcoming report on data disaggregation policy across all 50 states. We were very pleased to have Jenny Yang, deputy assistant to the president for racial justice and equity at the White House Domestic Policy Council, join us as a keynote speaker to discuss the Biden administration’s work to prioritize and advance racial equity, in addition to opportunities for advocates in our D-DAN network to plug into those efforts. The summit culminated with a strategy session to help participants reflect on and share learnings from the day and identify next steps for putting them into action.

It was truly a privilege to spend the day in community with so many wonderful partners, and it was really exciting to hear discussions continue way past the end of the official convening, including some fantastic new ideas for our shared work. We heard from several partners that working on data issues at the state and local level can feel siloed and often downright lonely, and that spending the day with other data advocates was a welcome reminder that we are in this together and actively building a network to sustain our shared work. Several partners shared that over the course of the day, they were able to make new connections with other D-DAN members and brainstorm new approaches and solutions to challenges they are facing in their own work. We also heard from partners interested in leveraging the D-DAN network to develop principles for data disaggregation that could be shared as a foundation for others interested in undertaking this work.

Another takeaway was the interrelatedness of work at the state and federal level: Several state partners shared an interest in continuing to be involved in work to revise federal race and ethnicity data standards through OMB listening sessions and by helping to prepare state and local agencies and elected officials for revised federal standards. We heard from many partners that it would be helpful to hold convenings like this one with additional representatives from state governments to facilitate information sharing and to help build alignment on priorities and approaches between the government and nonprofit sectors. In response, we’re exploring ways to support the development of such convenings at the state level and to incorporate participation by state government representatives into future national convenings.

The palpable energy in the room and many to-be-continued conversations at the end of a long day of thinking, talking, and strategizing about data really spoke volumes about our partners’ commitment to this work and to the communities who we all serve. As we look to the future of data disaggregation advocacy, we should always remember that the true strength of our (growing!) D-DAN network lies in the relationships that we are all building — with one another as advocates, with stakeholders, and with communities.

Amy Vertal is the senior manager of the census & data equity program at The Leadership Conference on Civil and Human Rights.