West Livaudais, MPH
Founder and Executive Director, Oregon Spinal Cord Injury Connection (OSCI)
Abstract
Building Local SCI Data Power Across the United States: How Community Organizations Can Use Medical Claims & Public Health Data to Transform SCI Advocacy
Across the United States, spinal cord injury (SCI) advocates, community organizations, and disability leaders face a persistent challenge: the absence of reliable, state-level data describing how many people are living with SCI, where they live, what their healthcare needs are, and what their care costs. National datasets—such as those produced by the National Spinal Cord Injury Statistical Center or the Christopher & Dana Reeve Foundation—provide valuable estimates, but they cannot answer the local questions that matter most to state policymakers, hospital systems, Medicaid programs, and community coalitions. Without locally grounded evidence, SCI populations remain largely invisible within state-level planning, funding decisions, and health equity efforts.
This presentation offers a practical, replicable blueprint for SCI champions in any state to build their own SCI data infrastructure using existing medical claims and injury surveillance systems. Drawing from Oregon’s pioneering work using the All Payer All Claims (APAC) database, the session demonstrates how advocates can partner with state agencies to estimate SCI prevalence, incidence, demographics, geography, healthcare utilization, and cost—including preventable complications such as pressure injuries, urinary tract infections, and rehospitalizations. The presentation outlines step-by-step methods for requesting summary data, defining SCI through ICD codes, framing research questions, and translating statistical outputs into compelling narratives that support advocacy, policy, and funding.
By empowering local organizations to generate credible, state-specific SCI data, this approach strengthens the national SCI movement and aligns with broader goals of health equity. Participants will leave with concrete tools to launch similar initiatives in their states.
Bio
West Livaudais, MPH, is the Founder and Executive Director of Oregon Spinal Cord Injury Connection (OSCI), a nonprofit dedicated to empowering individuals and families affected by spinal cord injury (SCI) across Oregon. After sustaining his own SCI in 2013, West recognized the significant gaps in post-injury support and systems navigation. He founded OSCI to ensure that every Oregonian with SCI has equitable access to comprehensive care, peer community, and long-term resources that promote independence and quality of life.
Combining lived experience with training in public health, West leads OSCI’s strategic vision, program development, and statewide collaborations. His work centers on improving care pathways, strengthening community-based supports, and advancing policies that reduce disparities for people with disabilities. Through advocacy, partnership, and community leadership, West is committed to building a more inclusive and responsive system for the SCI community in Oregon.
