Better Health through Data: Opportunities and Limitations of Health Data

October 6, 2022

Health data, such as race, ethnicity, language, sexual orientation and, gender identity are crucial to addressing public health needs and in understanding the various backgrounds and socioeconomic statuses of beneficiaries covered by federal and state health care programs. Across Medicare, Medicaid, commercial insurances, and federal delivery systems such as the Veterans Health Administration (VHA), Indian Health Services (IHS), and Federally Qualified Health Centers (FQHC), health data varies in completeness and usability. Several barriers that lead to limitations in health data include: privacy concerns, lack of standardized procedures or definitions, poor data disaggregation, lack of interoperability, and underfunded and understaffed public health departments. This event reviewed the importance and use of health data in addressing health disparities, the main barriers that persist in limitations to health data, and policy levers that can improve health data collection and utilization at the federal level including changes to data standards and systems, incentives and requirements, education and technical assistance, and regulation.


  • Samantha Artiga, MHSA, Vice President and Director, Racial Equity and Health Policy Program, KFF
  • Niall Brennan, MPP, Chief Analytics and Privacy Officer, Clarify Health
  • Irene Dankwa-Mullan, M.D., MPH, Chief Health Equity Officer, Deputy Chief Health Officer, Merative (formerly IBM Watson Health)
  • Elizabeth Lukanen, MPH, Deputy Director, State Health Access Data Assistance Center (SHADAC)
  • Sarah J. Dash, MPH, President and CEO, Alliance for Health Policy (moderator)

This event was made possible with support from Arnold Ventures.

Presentation: Better Health Through Data

Event Resources

Key Resources

(listed chronologically, beginning with the most recent)

“A Vision for Equitable Data Recommendations from the Equitable Data Working Group.” The White House. April 22, 2022. Available here.

 “Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity.” Grantmakers in Health. December 2021. Available here.

“Advancing Health Equity Requires More and Better Data.” Artiga, S. Kaiser Family Foundation. October 27, 2021. Available here.

“New Resources Enable Investigators to Expand Research into Dual-Eligible Individuals.” Mirr, A. Arnold Ventures. September 23, 2021. Available here.

“Data to Inform Research On Integrated Care For Dual Eligibles.” Hartman, L., Lukanen, E. State Health Access Data Assistance Center (SHADAC). April 21, 2021. Available here.

“Eliminating Bias in Health Data Science.” Danka-Mullan, I. IBM Watson Health Perspectives. June 24, 2020. Available here.

Additional Resources

“Patients Want Privacy, Accountability for How Their Health Data Is Used.” Henry, T. American Medical Association. August 15, 2022. Available here.

“Collection of Race and Ethnicity Data for Use by Health Plans to Advance Health Equity.” Haley, J., Dubay, L., Garret, B., et al. Urban Institute. July 22, 2022. Available here.

 “Quality Data Plays Key Role in Defining and Addressing Health Inequities.” Dwyer, M. The Pew Charitable Trusts. July 8, 2022. Available here.

“Improving Race and Ethnicity Data Collection: A First Step to Furthering Health Equity Through the State-Based Marketplaces.” Palanker, D., Clark, J., Monahan, C. The Commonwealth Fund. June 9, 2022.

“The Ethical and Transparent Use of Data to Reduce Health Disparities.” Blue Cross Blue Shield Association. April 27, 2022. Available here.

“Collecting Sexual Orientation and Gender Identity Information.” The Centers for Disease Control and Prevention. March 9, 2022. Available here.

“Public Health Is Missing Crucial Data on LGBTQIA+ People. It’s Not Hard to Collect” Cahill, S. Stat. January 14, 2022. Available here.

“Racial Equity Will Not Be Achieved Without Investing in Data Disaggregation.” Kauh, T. Health Affairs. November 29, 2021. Available here.

“We Need More Data on Health in Rural America.” Lutz, A., Chughtai, S. National Association of County Health Officials (NACCHO). November 17, 2021. Available here.

“Achieving Progress Toward Health Equity Using Race and Ethnicity Data: State Strategies and Lessons Learned.” National Governors Association (NGA), Duke Margolis Center for Health Policy, National Academy for State Health Policy (NASHP). November 8, 2021. Available here.

“Modernizing Race and Ethnicity Data in Our Federal Health Programs.” James, C., Lyons, B., Saynisch, P., et. al. The Commonwealth Fund. October 26, 2021. Available here.

“Health Equity and Social Determinants of Health in HEDIS: Data for Measurement.” The National Committee for Quality Assurance. June 2021. Available here.

“Advocating for Data Disaggregation by Race and Ethnicity.” Asian and Pacific Islander American Health Forum. May 2021. Available here.

“Using Data to Reduce Health Disparities and Improve Health Equity.” American Hospital Association. March 2, 2021. Available here.

“In Order to Defeat COVID-19, the Federal Government Must Modernize Its Public Health Data.” White, J., Badge, D. The Heritage Foundation. September 3, 2020. Available here.

“Ready, Set, Go! A Guide for Collecting Data on Sexual Orientation and Gender Identity.” National LGBTQIA+ Health Education Center. June 26, 2020. Available here.

“Using Data to Improve Local Public Health Practice.” Sumner, K. National Association of County and City Health Officials (NACCHO). April 2, 2019. Available here.

“Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement.” Agency for Healthcare Research and Quality. October 2018. Available here.



Samantha Artiga, MHSA
KFF, Vice President, Director, Racial Equity and Health Policy Program

Niall Brennan, MPP
Clarify Health, Chief Analytics and Privacy Officer

Irene Dankwa-Mullan, M.D., MPH
Merative, Chief Health Equity Officer, Deputy Chief Health Office, Clinical Affairs

Sarah Dash, MPH
Alliance for Health Policy, President and Chief Executive Officer

Elizabeth Lukanen, MPH
State Health Access Data Assistance Center, Deputy Director

Experts and Analysts

Sean Cahill, Ph.D., M.A.
Fenway Institute

Daniel Dawes, J.D.
Health Equity Tracker, Principal Investigator

Alonzo L. Plough, Ph.D., M.A.
Robert Wood Johnson Foundation, Vice President, Research-Evaluation-Learning and Chief Science Officer

Arielle Mir, MPA
Vice President of Health Care (Complex Care), Arnold Ventures

Stephen T. Parente, Ph.D.
Carlson School of Management at the University of Minnesota, Minnesota Insurance Industry Endowed Chair of Health Finance; Associate Dean, Carlson Global Institute

Sara Rosenbaum, J.D.
FairHealth, Chair


Renata Miskell, MPA
HHS Office of Inspector General, Chief Data and Analytics Officer

Jessie Tenenbaum, Ph.D.
North Carolina Department of State Health Services, Chief Data Officer


Georges C. Benjamin, M.D.
American Public Health Association, Executive Director

Hassanatu Blake, MBA, MPH
NACCHO, Director of Health Equity and Social Justice

Charles William Hawley, M.A.
National Association of Health Data Organizations, Director of Projects

Dara Lieberman, MPP
Trust for America’s Health, Director of Government Directions

Daniel Pagan, MPH, M.A.
NACCHO, Senior Research and Evaluation Specialist

Brandon G. Wilson, Dr.P.H., MHA
Center for Consumer Engagement in Health Innovation at Community Catalyst, Director