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HEALTH AFFAIRS FOREFRONT
GrantWatch
Related Topics:
* Public health
* Racism
* Health equity
* Health disparities
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* Access to care
* Technology
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EQUITY-CENTERED PUBLIC HEALTH DATA DEMANDS NEW VOICES AT THE TABLE
* Alonzo Plough
* Gail C. Christopher
April 28, 2022 Doi: 10.1377/forefront.20220427.865970
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We must learn a key lesson from this pandemic: The systemic exclusion of
marginalized communities from health, economic, and social advancements is
inextricably linked to our nation’s consistent failure to achieve greater health
equity for all.
While many complex factors contributed to the brutal toll of COVID-19, America’s
broken health data system—built on unconnected, aggregated, and time-lagged
information—actually amplified structural racism and discrimination. It played a
central role in placing historically excluded populations in the eye of the
storm.
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:
CENTER HEALTH EQUITY AND WELL-BEING IN NARRATIVE CHANGE
Data analysts need to become better storytellers to capture the complexities and
nuances of health outcomes and well-being, based on social determinants, such as
communities lacking nutritious food, good schools, and stable and affordable
homes. These stories make up the fabric of America’s underserved communities and
must become more central to our narrative. Those implementing this approach
should:
* Engage and guide key stakeholders in public health data system transformation
and develop a campaign to promote the importance of equity-focused data in
reimagining America’s public health data infrastructure;
* Increase equity-focused data literacy across sectors, including among public
health researchers, through training and workshops; and
* Disrupt the existing public health data narrative with one that is
community-driven, solutions-oriented, and equity-based.
PRIORITIZE EQUITABLE DATA GOVERNANCE AND COMMUNITY ENGAGEMENT
We must reinvent the way public health data are collected by improving data
governance; coordinating between federal, state, and local governments; and
prioritizing deeper community engagement. These steps are essential to replacing
outdated, ineffective data collection policies and practices with equity-based
surveillance, capable of disaggregating health outcomes by race, ethnicity,
disability, income, education, gender, and geography. Those implementing this
approach should:
* Prioritize and accelerate the implementation of the Foundations for
Evidence-Based Policymaking Act of 2018 to improve transparency, quality, and
availability of data;
* Establish a coordinated state and federal investment strategy that includes
regular fiscal support of state data infrastructure;
* Transform systems with defined governance and stewardship structures to
empower systemwide data sharing for agencies receiving public money; and
* Build interoperable data systems capable of real-time, data disaggregation,
with granularity across population groups and geographic
ENSURE PUBLIC HEALTH MEASUREMENT ADDRESSES STRUCTURAL RACISM
Public health metrics must capture and address structural racism, disabilities,
and other inequities by engaging hard-hit communities in identifying and
interpreting the data. Those implementing this approach should:
* Build on the Executive Order on Advancing Racial Equity and Support for
Underserved Communities to establish an Interagency Data Council, with
responsibility for equity, racial justice, and social and public health data;
* Ensure new systems collect self-reported data at the community level by race,
ethnicity, disability, income, education, gender identity, sexual
orientation, and social position to prioritize and target local health
challenges and measure progress; and
* Develop methods for interpreting public health data that are inclusive of
community input, paying attention to messaging, communication, and narrative.
A MULTISECTOR CALL-TO-ACTION
For its part, the RWJF is helping to advance an equity-centered data systems
overhaul by committing an initial $60 million in funding for several
community-based projects aimed at reinventing data collection practices across
the nation. Grantees will include a broad range of diverse community partners,
researchers, and advocates.
Among the RWJF funds allocated to date are $10 million to support advocacy and
training aimed at elevating more nuanced, disaggregated data analysis and
storytelling; $10 million to build community-academic partnerships with
historically Black colleges and universities in the Gulf Coast region; and $11.5
million to help transform local data environments to eliminate systemic racial
and structural barriers to increase more timely, accurate, and comprehensive
data collection. The RWJF has also allocated $2 million to help indigenous
organizations build decolonizing data capacity and expertise to address the
racial inequities and social determinants of health driving poor outcomes among
American Indian and Alaskan Native populations.
While foundations can be real catalysts for innovation, it’s imperative that all
sectors—health care, government, tech, business, and public health, among
others—join in advocating for historic equity-centered data reform. Some of the
sector-specific calls to action, outlined in the commission’s report, include
urging the federal government to develop minimum standards for data gathering,
disaggregation, and access. Government should ensure federally funded data
collection efforts generate hyper-local information, which measures the impact
of racism, disabilities, and other social determinants, on health.
Equity must also drive state policies for public health data analysis, with
robust indicators of existing disparities. And when it comes to local
governments, it is critical that diverse, local voices be in positions of
authority to inform data-driven decisions.
The report also urges US public health leaders to play an active role in driving
multisector collaboration around public health data sharing to improve the
timeliness and quality of data to better inform local decision making. Their
efforts can help strengthen capacity, diversity, and ongoing training of the
public health workforce to achieve greater health equity. The commission also
calls on America’s business sector to use its influence and resources to promote
public health data innovation by facilitating access to new, advanced
technologies, such as data integration, “big data” analytics, and data security.
With the commission’s recommendations now complete, the hard operational work
begins. This blueprint for equity-centered data transformation is only as
meaningful as the action it inspires.
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. We need to
do more than just talk about structural racism and discrimination—we must
acknowledge historic harms, without allowing the narrative to become
politicized. The biggest challenge ahead lies in securing a collective
commitment to disrupt the narrative, engage in deeper community listening, and
galvanize cross-sector collaboration to drive swift and impactful change.
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CONTENT
* Public Health
TOPICS
* Public health
* Racism
* Health equity
* Health disparities
* Disability
* Access to care
* Technology
* Researchers
* Quality of care
CITE AS
* "Equity-Centered Public Health Data Demands New Voices At The Table", Health
Affairs Forefront, April 28, 2022.
DOI: 10.1377/forefront.20220427.865970
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