ConclusionThe Commission recommendations make it 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 modernized public health data infrastructure where data are collected, analyzed, and interpreted with an eye toward equity. A modern, equity-centered public health data system helps policymakers identify problems, target interventions, and allocate resources to those who need it most.
Charting a Course for an Equity-Centered Data System
Recommendations from the National Commission to Transform Public Health Data Systems
Data are the building blocks for how we describe the health of people and the communities where they live—stories that emerge from data help the nation understand and contextualize what drives or impedes health and how structural factors like racism and other forms of discrimination influence one’s ability to live a healthy life.
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 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 the investments needed to improve health equity. Commissioners examined both the systems and the data needed to ensure public health information works for all, including: who the data we collect elevates, who is being centered in our data, who is being excluded, and why.
The Commission’s recommendations for the nation call on government at all levels, business, community-based organizations, philanthropy, and others to take specific action to reimagine and modernize the public health data system.
Commissioners developed the following overarching recommendations that offer a blueprint for change. They include recommendations on:
Changing how we tell stories about the health of people and communities so equity informs meaningful narrative change.
Prioritizing governance of our data infrastructure to put equity at the center.
Ensuring that public health measurement captures and addresses structural racism and other inequities.
RWJF Commits $50 Million in Funding to Encourage Action
To accelerate progress toward reimagining and modernizing our public health data system, RWJF will award $50 million in funding for a range of projects aimed at creating a more equitable national public health data infrastructure. The funding will include:
$11.5 milion to transform local data environments to eliminate barriers and increase cross-sector participation in public health data;
$10 million to build community-academic partnerships with historically black colleges and universities in the Gulf coast region to address health inequity; and
$10 million to advance local, state, and federal policies to promote more meaningful, nuanced data disaggregation to raise awareness about the need to address disparities.
Each of these initiatives will provide significant funding opportunities—for a broad range of community partners, researchers, and advocates—through additional requests for proposals managed by key partners in collaboration with RWJF. Additional calls for proposals will be announced in early 2022.
About the National Commission to Transform Public Health Data Systems
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 the investments needed to improve health equity. Led by Dr. Gail C. Christopher of the National Collaborative for Health Equity 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—health care, community advocacy, government, business, public health, and others.
RWJF established a first-of-its-kind commission to reimagine how health data are collected, shared, and used, and to identify the public and private sector investments needed to modernize our health data infrastructure and improve health equity.
“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. Read the Health Affairs blog post.