Transforming Public Health Data Systems
Robert Wood Johnson Foundation (RWJF) Commission released recommendations to build a robust 21st century public health data system to advance health equity.
Charting a Course for an Equity-Centered Data System
The COVID-19 pandemic highlighted many gaps in public health data gathering concerning race and ethnicity. How can data better illuminate the ways in which structural racism and other forms of discrimination drive health inequities?
National Commission to Transform Public Health Data Systems
Equity and overall wellbeing are not generally part of how we talk about health, and are not emphasized in our data collection. This has to change in order to truly move the needle on health equity and create thriving communities.
The Commission explored 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; building data capacity in under-resourced communities; community involvement in shaping data systems; data interoperability and other important areas.
RWJF challenged this commission to identify the improvements needed to make sure our data systems reflect the harms that racism and other forms of discrimination have on our communities.
The Commission, which included some of the nation’s leading experts in areas such as healthcare, community advocacy, government, business, public health, and others, released their recommendations October 2021.
Gail C. Christopher, DN is the director of the National Commission to Transform Public Health Data Systems and serves as executive director of the National Collaborative for Health Equity. Christopher is an award-winning social change agent with expertise in the social determinants of health and well-being and in related public policies. She is known for her pioneering work to infuse holistic health and diversity concepts into public sector programs and policy discourse. In her role as the Senior Advisor and Vice President at the W.K. Kellogg Foundation (WKKF), she was the driving force behind the America Healing initiative and the Truth, Racial Healing and Transformation effort. Dr. Christopher also served as Kellogg’s Vice President for Program. In 2015 she received the Terrance Keenan Award from Grantmakers in Health. She chairs the Board of the Trust for America’s Health. She is the visionary for and architect of the WKKF-led Truth Racial Healing and Transformation (TRHT) effort for America. TRHT is an adaptation of the globally recognized Truth and Reconciliation Commission (TRC) model.
Margarita Alegria, PhD is chief of the Disparities Research Unit at Massachusetts General Hospital, and a professor in the Department of Psychiatry at Harvard Medical School. Alegría is currently the PI of four National Institutes of Health (NIH)-funded research studies: The Impact of Medicaid Plans on Access to and Quality of Substance Use Disorder (SUD) Treatment, Building Infrastructure for Community Capacity in Accelerating Integrated Care, Building Community Capacity for Disability Prevention for Minority Elders and Latino Youths in Coping with Discrimination: A Multi-Level Investigation in Micro- and Macro- Time.
Mary T. Bassett, MD, MPH, was recently appointed as the Health Commissioner for the state of New York. Bassett has dedicated her career to advancing health equity. Dr. Bassett currently serves as the director of the François-Xavier Bagnoud (FXB) Center for Health and Human Rights at Harvard University and the FXB professor of the Practice of Health and Human Rights at the Harvard T.H. Chan School of Public Health. Prior to joining the FXB Center, she served as New York City’s commissioner of health from 2014 to 2018.
Raymond Baxter, PhD is co-chair of the NASEM Roundtable on Population Health, serves on the CDC Foundation Board of Directors, is a trustee of the Blue Shield of CA Foundation, and serves as an advisor to the Deans of the UC Berkeley School of Public Health and the UCSF School of Nursing. He most recently served as president and CEO of Blue Shield of California Foundation, leading its mission to make California the healthiest state and end domestic violence, by addressing the root causes of ill health and inequity. For 15 years, Baxter was Kaiser Permanente's senior vice president for community benefit, research, and health policy. Previously, he headed the San Francisco Department of Public Health, the New York City Health and Hospitals Corporation, and The Lewin Group.
Juliet K Choi, JD is chief executive officer of the Asian and Pacific Islander American Health Forum (APIAHF), a national health justice organization which influences policy, mobilizes communities, and strengthens programs and organizations to improve the health of Asian Americans, Native Hawaiians and Pacific Islanders. She is an accomplished cross-sector leader and coalition builder who specializes in change management, system reform and stakeholder relations, particularly in the areas of immigration, civil rights, health care and disaster relief.
Michael Crawford, MBA, MHL is the associate dean for strategy, outreach, and innovation (ADSOI) at the Howard University College of Medicine and Executive Director of Howard University’s 1867 Health Innovation Project. Prior to Howard University, Crawford served as the chief of staff at Unity Health Care, Inc., one of the largest health center networks in the United States. Prior to Unity, Crawford held domestic and international leadership positions at Johnson & Johnson, GlaxoSmithKline, and Gannett Company. Crawford brings expertise at the intersection of digital health equity, data, strategy, product development, policy, and operations. Crawford’s work focuses on developing scalable digital health and data models to help enhance health access, outcomes, and affordability for medically underserved and vulnerable populations.
Fernando De Maio, PhD is the director of research and data use for the Center for Health Equity at the American Medical Association and a professor of sociology at DePaul University. His research and teaching interests lie primarily within medical sociology and social epidemiology, with a focus on the concept of structural violence. His work has been guided by the notion of 'radical statistics'—the idea that statistical analysis can be used to not just describe the world, but to change it. He is the author of Global Health Inequities (Palgrave Macmillan, 2014) and co-editor of Community Health Equity: A Chicago Reader (University of Chicago Press, 2019) and Unequal Cities: Structural Racism and the Death Gap in America’s 30 Largest Cities (Johns Hopkins University Press, 2021).
Karen DeSalvo MD, MPH, MSc is the chief health officer at Google. DeSalvo served as acting assistant secretary for health at the U.S. Department of Health and Human Services (HHS) in the Obama administration. Under her leadership, HHS set and met historic goals in payment reform, supported transformed models of care delivery, including in primary care, and changed the approach to information distribution in the health system. She also served as the national coordinator for Health Information Technology, where she set national strategy and policy on health IT and championed interoperability in health settings.
Abigail Echo-Hawk, MA (Pawnee) is the executive vice president of the Seattle Indian Health Board and the director of the Urban Indian Health Institute, a tribal epidemiology center. She works to support the health and well-being of urban Indian communities and tribal nations across the United States. Echo-Hawk has been recognized as a national leader in decolonizing data for Indigenous people, by Indigenous people.
Thomas LaVeist, PhD is dean of the School of Public Health and Tropical Medicine at Tulane University in New Orleans, LA. Before joining Tulane, LaVeist was chairman of the Department of Health Policy and Management at the George Washington University, Milken Institute School of Public Health, and spent 25 years on the faculty of the Johns Hopkins Bloomberg School of Public Health. LaVeist's research focuses on the development of policy and interventions to address race disparities in health-related outcomes.
Alexis C. Madrigal is a writer at The Atlantic and the co-founder of the COVID Tracking Project. He's been a visiting scholar at the University of California, Berkeley's Information School as well as the Center for Science, Technology, Medicine, and Society.
John Lumpkin MD, MPH is president of the Blue Cross and Blue Shield of North Carolina Foundation, since April 2019. He leads the organization in pursuit of its stated mission to improve the health and well-being of everyone in North Carolina through a focus on: transforming the health care system (including oral health), expanding access to healthy food, supporting a healthy start in life for children, improving the physical conditions where people live, and strengthening the ability of communities to improve health.
Amy O’Hara PhD, MA is a research professor in the Massive Data Institute and executive director of the Federal Statistical Research Data Center at Georgetown University’s McCourt School for Public Policy. She also leads the Administrative Data Research Initiative, improving secure, responsible data access for research and evaluation, and is co-founder of the Civil Justice Data Commons. O'Hara addresses risks involved with data sharing by connecting practices across the social, health, computer, and data sciences. Her research focuses on population measurement, data quality, and record linkage. Prior to joining Georgetown, O'Hara was a senior executive at the U.S. Census Bureau where she founded their administrative data curation and research unit.
Jonathan Perlin MD, PhD is president, clinical operations and chief medical officer at HCA Healthcare, where he leads a team in using a learning health system model for improving care at the systems 185 hospitals and 2,200 sites of care. The effort achieved national recognition for preventing elective pre-term deliveries, reducing maternal mortality, increasing sepsis survival, and developing public-private-academic partnerships for improving infection prevention and treating COVID. Prior to HCA, Perlin was under secretary for health in the U.S. Department of Veterans Affairs. He is a MedPAC commissioner, a Congressional Budget Office health advisor, chairs the National Quality Forum, and is an elected member of the National Academy of Medicine. He has faculty appointments at Vanderbilt University and at VCU.
Ninez Ponce MPP, PhD is a professor in the UCLA Fielding School of Public Health, director of the UCLA Center for Health Policy Research, and principal investigator for the California Health Interview Survey. Her research contributes to the elimination of racial/ethnic/social disparities in health. Ponce recently served on the Board of Scientific Counselors, National Center for Health Statistics. She has served on committees for the National Academy of Sciences and the National Quality Forum, where her expertise has focused on setting guidance for health systems in the measurement and use of social determinants of health as tools to monitor health equity. In 2019, Ponce and her team received the AcademyHealth Impact award for their contributions to population health measurement to inform public policies.
Chesley Richards, MD, MPH, FACP served at the Centers for Disease Control and Prevention (CDC) from 1998 to 2020 in several roles including as deputy director for public health science and surveillance (DDPHSS). In this position, he was responsible for strengthening CDC’s science foundation by working across the Office of Science, the Office of Laboratory Science and Safety, the Center for Surveillance, Epidemiology, and Laboratory Services, and the National Center for Health Statistics. A primary focus of his role was to advance an agency-wide public health data strategy and serve as an advisor to the CDC director.
Javier Robles, JD is a faculty member and professor of the Kinesiology and Health Department and is the Director of the Center for Disability Sports, Health and Wellness at Rutgers University. He is the Chair of the New Jersey Disabilities Covid-19 Action Committee and was appointed by Gov. Murphy to the Puerto Rico commission. Robles is a Board member of the United Spinal National Board and the Vice President of the Latino Action Network of New Jersey (LAN). He is past President of Thisabled, LLC, an organization that provides support to persons with disabilities through self-empowerment and perseverance. He is the Founder of the Facebook Group, “People with Disabilities Helping Each Other Survive the Coronavirus.” Robles has written for numerous publications including, Latinos NJ, ThisAbled Nation, New Mobility. One of his poems was recently published in the book, Access Granted.
On the Frontlines: Efforts to Advance a More Equitable National Public Health Data System
Inspired by the Commission’s recommendations, RWJF is helping to support a range of projects designed to accelerate progress in data systems and modernize public health data infrastructure across the country.
Grantee highlights include:
- Modernized Anti-Racist Data Ecosystems (MADE) for Health Justice, a TPHD grant initiative, has awarded grants to communities in Arizona, Maryland, Oregon, and Pennsylvania to pursue data-driven initiatives that prioritize racial justice and health equity. Learn more about the communities.
- The Gulf Research Program (GRP) of the National Academies of Sciences, Engineering, and Medicine has awarded funding to support four projects that will advance the understanding of climate change effects on local health disparities. Collectively, these projects will create a series of models to better understand how environmental hazards influence human health outcomes and how those hazards will be affected by climate change under varying scenarios and time frames.
- With the goal of anchoring racial equity in data integration, the University of Pennsylvania's Actionable Intelligence for Social Policy (AISP) has selected its second cohort of community site teams to take part in their Equity in Practice Learning Community. Locations span the country from Rhode Island to the Bay Area in California to the Twin Cities in Minnesota.
- The latest blog released by Leadership Conference Education Fund is “Advancing Health Equity Through Disaggregated Race/Ethnicity Data.” The blog highlights the importance of how disaggregated data can enhance care delivery and improve health outcomes. This blog is the twelfth installment in the Data Disaggregation Deconstructed series, which explores how data disaggregation can improve equity in a variety of policy domains.
- The Stakeholder Engagement Toolkit, developed by the Data Foundation, serves as a valuable resource for federal agency personnel seeking to engage stakeholders in a meaningful manner during policy and program decisions, with a specific focus on data collection and use.
- The National Academies of Sciences, Engineering, and Medicine released a new report on racial inequity in the criminal justice system. The report, Reducing Racial Inequality in Crime and Justice, offers recommendations to advance racial equity in the justice system, including community-based solutions and the need for improved data collection and transparency. Read the report.
Grant Initiatives
RWJF is committed to the Commission’s recommendations for a modernized public health data infrastructure where data are collected, analyzed, and interpreted with an eye toward equity. The Foundation has committed an initial $50 million in funding toward that goal. The following RWJF Transforming Public Health Data Systems grant initiatives are aligned with the Commission’s three overarching recommendations.
Grant Initiatives:
- Developing key well-being metrics to improve health and equity in Atlanta
- Engaging communities to advance health equity in national public health surveillance data
- Improving data collection to better examine the health impacts of incarceration
- Supporting the discovery of evidence-based tools that combat misinformation and disinformation in public health
Grant Initiatives:
- Disaggregating the data of Indigenous people and respecting sovereignty
- Improving federal OMB standards for collecting race and ethnicity data
- Strengthening data integration between criminal justice and public health
- Testing the predicting power of SDOH indices in federal health programs
- Transforming machine learning datasets for equitable healthcare outcomes
Grant Initiatives:
- Accelerating the implementation of the federal Evidence-Based Policymaking Act
- Catalyzing health departments and partners to advance data modernization and health equity
- Closing gaps in the healthcare of high-risk populations with new interoperability standards
- Evaluating RWJF investments to transform public health data systems
- Implementing Racial Equity Principles within Integrated Data Systems
Featured Initiatives
Advancing state and local policy change to promote data disaggregation
Supporting HBCUs to enhance data capacity and address climate and health concerns in the Gulf South
Transforming local data infrastructure to advance health equity
Unpacking the Federal Government’s New Changes for Collecting Data on Race & Ethnicity
To build a society where all Americans can live their healthiest and most vibrant lives free from discrimination, everyone needs to be seen. For the first time since 1997, the Office of Management and Budget (OMB) expanded its race and ethnicity standards to capture historically excluded communities, who will now be visible in federal data collection for the first time.
On April 11, the National Commission to Transform Public Health Data Systems held a briefing to discuss OMB’s updated race and ethnicity standards and the implications for our public health data systems.
Recent Content
Roundtable Discussion: Honoring Communities in an Equity-Centered Public Health Data System
Recommendations from the National Commission to Transform Public Health Data Systems were informed by the work of five expert panels on population-specific data gaps. The chairs of three of these panels—Black people, People Living with Disabilities, and Women—joined Health Equity for a roundtable discussion on how to build a public health data system that’s co-created with communities and addresses the needs of those who have been historically excluded.
Big Data: How Data and Tech Can Inform Equity-Centered Public Health Data
A supplement featured in Big Data spotlights recommendations from the National Commission to Transform Public Health Data Systems and explores the many ways the data and tech industry can partner with the public health field to improve data collection, analysis, stewardship, and use with equity at the core.
A Need For Disability Data Justice
“A disability data justice approach is urgently needed. Public health data systems and infrastructure must be built to collect disability data and use this information to combat ableism and support equity and social justice,” writes Bonnie Swenor, member of RWJF’s Expert Panel for the National Commission to Transform Public Health Data Systems.
Equity-Centered Public Health Data Demands New Voices At The Table
“We need to do more than just talk about the social determinants of health—we need to operationalize them within a justice-focused data framework,” write Commission Director Gail Christopher and Alonzo Plough, RWJF vice president, Research-Evaluation-Learning and chief science officer.
Special Publication: Charting an Equity-Centered Public Health Data System
Building a public health data system rooted in health equity is key to building a Culture of Health, where everyone has a fair and just opportunity to thrive. Explore how ideas and best practices of the data and tech industries could improve our data systems.
To Address Women’s Health Inequity, It Must First Be Measured
This article highlights the recommendations for how existing data systems must be transformed in order to advance equity in women’s health.
Related Content
A Statement on the New OMB Federal Data Collection Standards
Nuanced data collection and disaggregation beyond broad racial and ethnic categories are pivotal to building an equity-centered public health data system. On March 28, the Office of Management and Budget (OMB) revised federal race and ethnicity data standards so that they give a more accurate representation of communities that historically have been excluded, changes that were a key component of the Commission’s recommendations. Commission Director Gail Christopher shares her thoughts on the new federal data standards.
Shortsighted COVID policies are accelerating harm for people with disabilities
“We need good, timely public health data to create a true public health narrative that advances equity and centers power in the community—in this case, the disability community,” writes Commissioner Javier Robles, National Commission to Transform Public Health Data Systems.
Reimagining Our Public Health Data System with a Focus on Equity
In a second webinar, experts walked through the Commission recommendations and actionable solutions to reimagine and transform our public health data system.
Centering Equity in Data—Transforming Our Public Health Data Systems
An interactive discussion of the Commission report, discussing recommendations and hearing insights from experts about how and why we must prioritize equity in data.
New Commission To Tackle How National Health Data Are Collected, Shared, And Used
“Our hope is that these recommendations serve as a catalyst for meaningful change before the next public health crisis hits. It’s impossible for the nation to fix what isn’t measured,” said Alonzo Plough, RWJF vice president, Research-Evaluation-Learning and chief science officer.
Roundtable Discussion: Building an Equitable Future Through Data Disaggregation
For data to be meaningful, it must reflect accurate and timely information about all population groups and their opportunities to experience health and wellbeing. Current data on race and ethnicity puts people in broad categories that don’t allow distinct populations to be seen. An expert roundtable shares insights on expanded race and ethnicity standards to capture a more complete picture of the full spectrum of health experiences communities face.