Disaggregation Nation 2023 » Speaker Bios
Disaggregation Nation! A Data Equity Summit
Hosted by: Data Disaggregation Action Network | The Leadership Conference Education Fund
Who counts depends on who is counted.
Thank you for joining us at Disaggregation Nation! A Data Equity Summit! We were so grateful to spend the day in community with our partners working to advance data disaggregation and equity, and we really appreciated your thoughtful engagement and questions. We hope that the panel discussions, resources shared, and opportunities to connect with others engaged in this work brought fresh insights and inspiration to your own efforts to advance data equity.
Speaker Presentations:
Implementing Data Disaggregation Laws and Regulations
part 1: Navigating and Improving State Data Systems
- AJ Scheitler, Ed.D., Director of Development, Engagement and Strategic Planning at the UCLA Center for Health Policy Research
- Susan H. Babey, Ph.D., Senior Research Scientist at the UCLA Center for Health Policy Research
- Tara Becker, Senior Research Associate, UCLA Center for Health Policy Research
- Sharmin Hossain, Chief Data Officer, Maryland Department of Human Services
Implementing Data Disaggregation Laws and Regulations
part 2: Challenges, Solutions, and Community Roles
- Thu Quach, Ph.D., President, Asian Health Services
- Julia Liou, Chief Executive Officer, Asian Health Services
- Caroline Sanders, Senior Policy Director, California Pan-Ethnic Health Network
- Karla Thomas, Co-Executive Director, Empowering Pacific Islander Communities (EPIC)
- Andrew C. Lee, California Policy Manager, Southeast Asia Resource Action Center (SEARAC)
Race and Ethnicity Data Messaging Framework and Strategy:
Improving Race and Ethnicity Data Collection Messaging Framework and Strategy
- Cassidy Schwartz, Account Director, CLYDE
- Austin Adams, Account Director, CLYDE
- Jake Gómez, Public Affairs Specialist, CLYDE
New Jersey Alliance for Immigrant Justice
- Amy Torres, Executive Director, New Jersey Alliance for Immigrant Justice
Administrative Advocacy:
Administrative Advocacy and Data Disaggregation Policy Change: Opportunities and Strategies to Enhance Data Compilation and Quality
- Rosalind Deborah Gold, Chief Public Policy Officer, NALEO Educational Fund
Invisible No More: AAPI Data Equity and Disaggregation
- Anita Gundanna, Co-Executive Director, Coalition for Asian American Children and Families (CACF)
Administrative Advocacy for Data Disaggregation – Connecticut’s approach
- Michelle Riordan-Nold, Executive Director, CT Data Collaborative
- Manisha Srivastava, Policy Coordinator and Economist in the Data & Policy Analytics unit at the Connecticut Office of Policy & Management (OPM)
Data Privacy Considerations:
Striking a balance between data disaggregation and data privacy – technical considerations
- Claire McKay Bowen, Principal Research Associate and Statistical Methods Group Lead at the Urban Institute
Demographic Data Collection & Privacy Considerations
- Mara Youdelman, Managing Director for Federal Advocacy, National Health Law Program
Building Data Literacy for CBOs Serving Communities of Color:
National Equity Atlas Fellowship
- Selena Tan, Senior Associate, PolicyLink
Advancing Data Literacy and Availability for CBOs Serving Communities of Color Marjorie A. Innocent, Ph.D., Director of Learning and Impact, NAACP
Speaker Bios »
Convening Materials:
How Race Categories on U.S. Census Forms Have Evolved
This recent article from the New York Times overviews how race and ethnicity data collection in the U.S. has evolved over the years, providing context for our work to further disaggregate these data.
Implementing Data Disaggregation Laws and Regulations panel resources:
Data Disaggregation by Race or Ethnicity: A Review of State Laws and Bills
This is a draft report on the status of data disaggregation policy in all 50 states. Key findings were discussed in the Navigating and Improving State Data Systems panel. Note that this report will be released more broadly at a later date, so please do not share beyond your organization.
Resource hub from the UCLA Center for Health Policy Research
This resource hub from the UCLA Center for Health Policy Research Data Equity Center compiles a variety of resources on data disaggregation and data equity.
Resources from the Network for Public Health Law
As discussed during UCLA’s presentation on navigating state data systems, the Network for Public Health Law has published many resources on public health data.
MyMDThink portal
Example of an integrated health and human services portal from Maryland, mentioned during the navigating state data systems panel.
Race and Ethnicity Data Messaging Framework and Strategy panel resources:
Your Community Counts | Organizing Toolkit for Data Equity
This toolkit was discussed in the Race and Ethnicity Data Messaging Framework and Strategy panel and can be used to support your messaging/organizing activities.
Administrative Advocacy panel resources:
CT Data Collaborative
Research and resources from the CT Data Collaborative, which works to connect people and data to promote informed decision-making and to advance equity in Connecticut.
Invisible No More campaign
Learn more about the Coalition for Asian American Children and Families’ Invisible No More campaign to advance data disaggregation for AAPI communities.
Data Privacy panel resources:
Resources from the National Health Law Program:
- Demographic Data Collection in Medicaid & CHIP: CMS Authority to Collect Race & Ethnicity Data, NHeLP
- The Constitutionality of Demographic Data Collection, NHeLP
NHeLP’s Data Privacy Series:
- Administrative Data: Providing Information to Advance Autonomy and Drive Equality, Movement Advancement Project
- Striking the Balance: Approaches to Racial Equitable Data Collection that Protect Privacy in Health, Race Forward
- This Data Not That Data: Big Data, Privacy, and the Impact on People with Disabilities, Disability Rights Education and Defense Fund
- Data and Discrimination: Improving Data Privacy for Low-Income Older Adults in Managed Care, Justice in Aging
Building Data Literacy panel resources:
National Equity Atlas Fellowship
Information on the National Equity Atlas Fellowship, which is designed to equip community leaders of color with skills and tools to leverage data to advance racial and economic equity.
Latino Coalition for a Healthy California promotores program
Learn more about LCHC’s promotores program, which works to incorporate promotores into its community programming, build workforce pipelines, and bring community voices to LCHC’s advocacy.
Black Progress Index
Information on the Black Progress Index, which supports a greater understanding of the well-being of Black people and the conditions that surround their lives
Travel/Accommodations:
For any questions regarding reimbursement for or accommodations, please email [email protected].