For decades, these dysfunctional data-gathering practices have neglected the deep-seated health disparities and racial injustices driving disproportionate chronic illness and disease among marginalized communities. And when the pandemic struck, inconsistent and flawed nationwide data undercut efforts to collect timely, actionable information to improve access to vaccines, testing, and life-saving health care services for those most in need. There is no quick fix to this long-standing problem, but an important first step is to work across sectors to reinvent our existing data infrastructure.
To that end, the Robert Wood Johnson Foundation (RWJF) launched the first-of-its-kind, independent National Commission to Transform Public Health Data Systems. We wrote about this news in Health Affairs last May and wanted to share the commission’s progress in reimagining how data are collected, shared, and used to improve America’s poor record of health equity.
From the outset, the commission’s goal has been to not only “modernize” our data infrastructure but also disrupt its very foundation. You can’t keep the same players at the table and change the conversation on equity and data modernization. With this goal in mind, the RWJF selected commission members from across multiple sectors—health care, business, technology, and public health—innovators and thought leaders with expansive perspectives to challenge the way we think about data with equity at the core.
After months of thoughtful deliberations, the commission reached a unified vision for an equity-centered public health data infrastructure, grounded in the acknowledgement of historic harms and committed to advancing greater social and racial justice. In October 2021, the commission released its blueprint for change. Here are the commission’s three “North Star” guidelines for a series of recommendations, including suggested implementation strategies. (author abstract)
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