The pandemic has highlighted many gaps in public health data gathering concerning race and ethnicity. The Robert Wood Johnson Foundation (RWJF) is establishing a National Commission to Transform Public Health Data Systems, which is charged with re-imagining how data are collected, shared, and used, and identifying which public- and private-sector investments are needed to modernize public health data infrastructure to improve health equity.
Gail C. Christopher, D.N., Executive Director, National Collaborative for Health Equity, and Alonzo Plough, Ph.D., Vice President, Research-Evaluation-Learning and Chief Science Officer at the RWJF co-authored a recent blog post in Health Affairs describing the creation of the new commission, which Christopher will lead. Current health data constructs and systems exemplify structural racism in their lack of detail by race and ethnicity and failure to make disaggregated data available when they have been collected, they wrote. “These tremendous gaps in data that can help explain disparities by race and ethnicity prevent us from responding to crises in ways that create equitable outcomes,” it said.
The commission will explore challenges and opportunities such as new data sources and measures that show promise for future public health surveillance; data disaggregation to better identify risk and outcomes by race, gender, and ethnicity; data collection on vulnerable populations, such as the incarcerated; use of data in communication with the public; building data capacity in poorer resourced communities; community involvement in shaping data systems; and data interoperability.
There is not only an urgent need for disaggregated data to better show inequities in outcomes but also for data that can help explain why those inequities exist. Through improved population health monitoring with more meaningful data, the RWJF hopes to achieve more equitable health outcomes in the future.
This commission’s recommendations could influence public health information and data architecture and systems for decades to come, the authors stressed.
The blog post notes that “data can also serve as a common language for people working across multiple sectors. When data are not connected, the power of data is lost. And also when data collection is not designed to capture what really matters to advance equity, no progress on that front can be made. Without serious deliberation about the effectiveness of health data and the courage to take game-changing actions now, we won’t right the wrongs that existed before COVID-19 and will exist afterward.”
The data problems they describe include limited funding; a lack of coordination between federal, state, and local data systems; and technological, bureaucratic, and systemic hurdles have all threatened the efficiency, accuracy, and timeliness of data. “COVID-19 has only put a glaring spotlight on gaps that have existed for far too long,” the blog notes.
The RWJF has challenged this commission to identify the improvements in data systems that will better address social determinants and structural factors that result in inequitable health outcomes and make recommendations to the nation. The commission—which will meet through the spring and early summer of 2021 and expects to release recommendations in fall 2021 for specific steps we can take—includes some of the nation’s leading experts in areas such as health care, community advocacy, government, business, public health, and others.
The members are:
• Commission Director: Gail C. Christopher, D.N., Executive Director, National Collaborative for Health Equity
• Margarita Alegria, Ph.D., Chief of the Disparities Research Unit, Massachusetts General Hospital; Professor, Department of Psychiatry, Harvard Medical School
• Mary T. Bassett, MD, MPH, Director, François-Xavier Bagnoud (FXB) Center for Health and Human Rights, Harvard University
• Raymond Baxter, Ph.D., Co-Chair, Roundtable on Population Health, National Academies of Sciences, Engineering, and Medicine
• Juliet K. Choi, J.D., Chief Executive Officer, Asian & Pacific Islander American Health Forum (APIAHF)
• Michael Crawford, MBA, M.H.L., Associate Dean for Strategy, Outreach, and Innovation (ADSOI), College of Medicine, Howard University
• Fernando De Maio, Ph.D., Director, Research and Data Use, Center for Health Equity, American Medical Association, and Professor of Sociology, DePaul University
• Karen DeSalvo, MD, MPH, M.Sc., Chief Health Officer, Google
• Abigail Echo-Hawk, M.A., Director, Urban Indian Health Institute; Chief Research Officer, Seattle Indian Health Board
• Thomas LaVeist, Ph.D., Dean, School of Public Health and Tropical Medicine, Tulane University
• Alexis C. Madrigal, Staff Writer, The Atlantic, Co-Founder, The COVID Tracking Project
• John Lumpkin, MD, MPH, President, Blue Cross and Blue Shield of North Carolina Foundation
• Amy O'Hara, Ph.D., M.A., Research Professor, Massive Data Institute, and Executive Director, Federal Statistical Research Data Center, McCourt School for Public Policy, Georgetown University
• Jonathan Perlin, MD, Ph.D., Chief Medical Officer and President, Clinical Services, HCA Healthcare
• Ninez Ponce, M.P.P., Ph.D., Director, UCLA (University of California Los Angeles) Center for Health Policy Research; Principal Investigator, California Health Interview Survey; Professor, Department of Health Policy and Management, UCLA Fielding School of Public Health
• Chesley Richards, MD, MPH, Retired Deputy Director for Public Health Science and Surveillance (DDPHSS), Centers for Disease Control and Prevention (CDC)
