Title:

Mind the Gap! Advancing Data Equity to Improve Population Health Equity for People with Disabilities

Background: Data equity, the meaningful representation of all populations in the collection, analysis, and reporting of data, is foundational to health equity. Regrettably, a gap in Maine’s public health data prevents analysis of Covid-19 health equity for people with disabilities (PWD) in-state. Objective: To advance health equity for PWD by analyzing the drivers of public health data gaps and providing actionable recommendations for addressing them. Methods: An extensive literature search plus interviews with key professionals, webinars, and health data policy research were conducted. Results: Despite compelling ethical, legal, and financial considerations, many states have disability data gaps, preventing health equity research and perpetuating biases in health decision-making by providers, planners, and policymakers. Three major determinants drive data equity in the US. Conclusion: Both rationale and guidance on achieving data equity for PWD exist. Clarity on an overarching health equity goal and consistent dissemination and proactive support to states from federal health leaders will be critical to advancing the work, especially for data equity. Twelve recommendations for state-level and federal action were made to 1) change mindsets around disability and data equity, and 2) guide and assist alignment of states' policies.

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