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      RWJF Commission Releases Roadmap for an Equity-Centered Public Health Data Infrastructure, Provides $50 Million in Funding to Encourage Action

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      3. Robert Wood Johnson Foundation Commission Releases Roadmap for an Equity-Centered Public Health Data Infrastructure, Provides $50 Million in Funding to Encourage Action

      Commission calls for all sectors to contribute to transform data systems, which currently impede progress in addressing structural racism and improving health equity.

      Princeton, N.J.—The COVID-19 pandemic laid bare the gaps in our public health and health data infrastructure and illuminated the many ways in which they perpetuate vast health inequities. To work toward a modernized health data system, the Robert Wood Johnson Foundation (RWJF) established a first-of-its-kind National Commission to Transform Public Health Data Systems to reimagine how data are collected, shared, and used, and identify investments needed to improve health equity. Today, the Commission released its recommendations to the nation, calling on government at all levels, business, community-based organizations, philanthropy, and others to take specific action to transform the public health data system. The Foundation also announced $50 million in grantmaking toward that goal.

      Led by Gail Christopher, DN, executive director, National Collaborative for Health Equity (NCHE), and supported by a research team at the RAND Corporation, the 16-member Commission represents a diverse group of innovators and experts representing multiple sectors, including healthcare, community advocacy, government, business, public health, and others.

      Commissioners examined both the systems and the data needed to ensure that public health information works for all, asking who the data we collect elevates, who is centered in our data, who is excluded, and why. Their overarching recommendations offer a blueprint for change and provide specific calls to action for a broad range of sectors.

      “Our country must now embrace this unprecedented time of change to create transformational innovations in our core systems and opportunity structures,” said Dr. Christopher. “Our public health system and the data upon which it is based are key to achieving health equity. When implemented, recommendations offered by these diverse commission members will help propel America forward on our course toward healing and justice.”

      The detailed recommendations include:

      • Changing how we tell stories about the health of people and communities. Data collected and interpreted equitably can illuminate where some people and places are cut off from key drivers of health, such as nutritious food, good schools, and stable and affordable homes as well as the historical policies—like housing discrimination—that limit the opportunities available in many communities.
      • Prioritizing governance of our data infrastructure to put equity at the center. This includes collecting data across population groups by race, ethnicity, and geography and investing resources at the federal, state, and local levels where they are needed most.
      • Ensuring that public health measurement captures and addresses structural racism and other inequities. This involves engaging community members in interpreting public health data and metrics that are community informed.

      The Commission recommendations make clear that, in our current system, data on health inequities are divorced from the history and community conditions that shape poor health outcomes, resulting in an incomplete picture of who is most impacted and why. The COVID-19 pandemic underscores the continued and substantial need for a transformed public health data infrastructure, where data are collected, analyzed, and interpreted with an eye toward equity and addressing the many social determinants of health.

      To accelerate progress toward that goal, RWJF will award $50 million in funding for a range of projects aimed at creating a more equitable national public health data infrastructure, including:

      • A grant of $11.5 million to transform local data environments to eliminate systemic racial, structural, and bureaucratic barriers in public health data and increase cross-sector cooperation for more timely, accurate, and comprehensive information; 
      • A grant of $10 million for building community-academic partnerships with historically black colleges and universities in the Gulf Coast region of the United States to expand capacity in the creation, collection, analysis, and interpretation of data to transform local public health data systems to address health inequity; and
      • A grant of $10 million to advance local, state, and federal policies to promote more meaningful, nuanced data disaggregation beyond broad racial/ethnic categories to support more comprehensive strategies to raise awareness about the need to address disparities.

      Each of these initiatives includes significant funding opportunities for a range of community partners, researchers, and advocates. Additional grants will be announced in the coming weeks.

      The Robert Wood Johnson Foundation convened this Commission recognizing that the existing structure of health data systems does not effectively address the impact of structural racism on health or powerfully engage actions to address this at a community level. The nation needs a robust, transformative effort to address the shortcomings of our current health data system, which includes public health but also other relevant sectors. 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.

      Alonzo Plough, PhD, MPH, RWJF Chief Science Officer and Vice President for Research, Education and Learning 

      RWJF and Commission members will spend the next year sharing the recommendations with a variety of changemakers, including federal, state, and local governments, public health, business, health systems, nonprofits, professional associations, and philanthropy.

      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.

       

      About the Robert Wood Johnson Foundation

      For more than 45 years the Robert Wood Johnson Foundation has worked to improve health and health care. We are working alongside others to build a national Culture of Health that provides everyone in America a fair and just opportunity for health and wellbeing. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.

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