Importance of Health Data in Policy Making

🤯 This week, I had a conversation that was both eye-opening and deeply concerning. A real-world data (RWD) strategist who works with public sector agencies shared that many contracts for Social Determinants of Health (SDOH) data are being canceled—not because the data lacks value, but because "SDOH" has become a politically sensitive term. As a result, agencies can no longer procure data for this purpose, despite its critical role in understanding healthcare disparities. At a time when health inequities are worsening—with disparities in access, outcomes, and representation growing—the idea of restricting the very data that helps us monitor and address these gaps is deeply troubling. Over the years, DEI-driven healthcare research has played a crucial role in uncovering systemic issues, such as: 📌 Gender disparities in clinical research and pain management, often leaving women underdiagnosed and undertreated. 📌 Racial and ethnic disparities in access to care, preventive screenings, and chronic disease management. 📌 Rural healthcare gaps, where communities face provider shortages and higher mortality rates due to limited access. These insights have driven policy changes, funding decisions, and industry-wide initiatives aimed at making healthcare research and delivery more inclusive. Yet now, we’re witnessing a sudden and dramatic shift away from these priorities, as the language of health equity becomes politicized. If we stop collecting and analyzing health equity data, aren't we simply choosing not to see the problem? Would love to hear from you if you've seen these sudden shifts impact your own area of healthcare research! #HealthEquity #SDOH #HealthcareData #DEI #HealthPolicy

We are sounding the alarm on an urgent threat to evidence-based policymaking. With the elimination of the 17 people running the National Survey on Drug Use and Health (NSDUH), we will lose up-to-date information on tobacco, alcohol, and drug use, mental health, and other health-related issues in the United States. This irreplaceable national survey is our only comprehensive window into substance use across America. Without it, researchers will be unable to track trends, identify emerging issues, or use reliable data to evaluate the impact of interventions, leaving policymakers to navigate a national crisis completely blind. This devastation extends beyond NSDUH. All population-based studies conducted by the Department of Health and Human Services face imminent threat. Why should this concern every American? These studies form the scientific foundation for improving health outcomes and saving lives nationwide. Consider Alzheimer's Disease, which devastates millions of Americans and their families. Early detection through population-based surveys is dramatically more cost-effective than clinical assessments yet provides powerful insights for identifying risks. These surveys drive prevention strategies that both save lives and reduce the enormous financial burden of care, a burden that falls on patients and their loved ones. The recent funding cuts eliminate these opportunities at precisely the wrong moment. My colleague Tristanne Staudt, Executive Director of the American Association of Public Opinion Research (AAPOR), joins me in demanding immediate government action to restore these critical data collection capabilities. As of this moment, though the support at SAMHSA is gone, the research contract is still in place. It is crucial that this contract is not terminated. For our colleagues outside of the federal government, we urge you to contact your legislators today with this message: Eliminating these research tools directly undermines our ability to protect public health efficiently and effectively. The cost of this data is minimal; the cost of flying blind is immeasurable. #DataInfrastructure #CountOnStats Tristanne Staudt, MBA Frauke Kreuter Steve Pierson https://lnkd.in/eZ-J4Ut8

Excited to share insights from our (my incredible co-author Dr. Chethan Sathya MD MSc) latest article in Health Affairs: "Harnessing the Power of Health Data to Combat Gun Violence." In the U.S., gun violence continues to be a critical public health issue. Our current public health data infrastructure has limitations and needs to be improved in order to detect and mitigate emerging threats. In this article, we discuss how technological solutions like EHRs, NLP, and AI can modernize health data infrastructure, connect disparate data sources, and transform raw information into actionable insights. It's crucial that we balance data utility with privacy and community trust, ensuring ethical data practices and community involvement. We call on policymakers to prioritize funding for comprehensive, interoperable health data infrastructure and for collaboration among healthcare providers, tech companies, researchers, and communities. Together, we can implement data-driven solutions to prevent firearm injuries and death. Read the full article here: https://lnkd.in/gjhyQh4f #HealthData #GunViolencePrevention #PublicHealth #EHR #NLP #AI #DataDrivenSolutions #HealthAffairs #Policy