The Cost of Silence
A DISCUSSION OF
Tribal Health Equity Requires Tribal Data EquityPublic health is the tightrope walk of balancing society’s well-being, navigating microscopic threats and macroscopic challenges. Lack of data, or lack of access to data, often determines the outcome of public health crises. As Meghan Curry O’Connell illustrates in “Tribal Health Equity Requires Tribal Data Equity” (Issues, Fall 2024), overcoming barriers to data sharing is essential to advancing public health for communities in need.
A large part of the problem traces to the disconnect between privacy laws and the urgent need for data access, a challenge the author effectively highlights by raising awareness and advocating for policy reform, all while demonstrating the resilience needed to address such systemic issues. Fragmented state privacy laws and inconsistent interpretations of Health Insurance Portability and Accountability Act (HIPAA) rules across state lines have created a patchwork of regulations. These well-intended but often misunderstood rules lead to overly cautious privacy measures that, while protective, block crucial evidence-based policy decisions. By prioritizing overly cautious or vague notions of privacy concerns, we’re unintentionally hindering access by professionals trying to meet public health challenges. For example, lack of timely data on syphilis in 2021 in Great Plains tribal communities has delayed prevention and treatment efforts. And on a larger scale, failure to share critical data on opioid addiction has contributed to over 560,000 deaths in this ongoing health crisis.
Data access is hindered by a complex mix of factors. Logistically, public health systems often lack the infrastructure to securely collect and share data across regions. Financially, underfunded health agencies struggle to support data interoperability. Politically, conflicting state and federal privacy regulations, and differing priorities among agencies, create barriers to data sharing. For instance, rural health departments may lack the funds for advanced systems, while inconsistent HIPAA interpretations prevent timely data exchange across states.
Lack of data access isn’t just an inconvenience; it perpetuates suffering and is a systemic flaw that must be addressed.
Addressing these challenges requires advancing data interoperability without compromising privacy. Frameworks such as the Fast Healthcare Interoperability Resources (FHIR) standard and the Trusted Exchange Framework and Common Agreement (TEFCA) enable secure data exchange across health systems, but they are primarily designed for clinical settings. Public health requires more flexibility and real-time access to a broader range of data sources. To meet these needs, ongoing efforts from initiatives such as the Public Health Data Standards Consortium, the Public Health Information Network, and the Public Health Informatics Institute, along with the standards recommended by FHIR and Health Level Seven International and ongoing advances in electronic case reporting, must be integrated into a cohesive framework.
A potential solution could be the creation of a public health interoperability framework, akin to TEFCA but tailored for public health. It would focus on providing public health agencies with tools to securely and efficiently access critical data while maintaining privacy standards, ensuring effective and responsive public health actions. Toward this aim, the US Centers for Disease Control and Prevention and the Office of the National Coordinator for Health Information Technology are leading an initiative to establish consistent system requirements and accelerate data modernization. However, as O’Connell’s article makes clear, realizing this vision will demand urgent policy reforms, widespread buy-in from key stakeholders, and a robust incentive framework to ensure its implementation.
Lack of data access isn’t just an inconvenience; it perpetuates suffering and is a systemic flaw that must be addressed. The cost of inaction is measured in lives lost and opportunities missed. Recognizing and addressing this is the first step toward building a more responsive public health system.
Joe Lennerz
Chief Scientific Officer
BostonGene