COVID-19: Accelerating Real-time Electronic Data Capture for Tracking, Learning & Improvement-COVID-19: Accelerating Real-time Electronic Data Capture for Tracking, Learning & Improvement (Webinar)

Video Transcription

Video Summary

The webinar titled "Advancing Clinical Registries to Support Pandemic Treatment and Response" featured a series of presentations and discussions on the critical role of clinical registries during the COVID-19 pandemic. Hosted by Helen Burstyn, CEO of the Council of Medical Specialty Societies, the session was the second in a series funded by the Gordon and Betty Moore Foundation in collaboration with the AAMC.<br /><br />Key presentations included:<br /><br />1. <strong>Dr. Atul Butte</strong>: From UCSF, he discussed the transformation of the University of California's health data systems to respond to COVID-19. This involved centralizing clinical data across multiple campuses, updating data daily instead of monthly, and making results publicly accessible via Twitter.<br /><br />2. <strong>Dr. Andrew Ip</strong>: Highlighted efforts at John Fuhrer Cancer Center in New Jersey, including creating a comprehensive COVID-19 clinical registry, emphasizing manual data collection and the rapid deployment of a large database.<br /><br />3. <strong>Dr. Subha Madhavan</strong>: From Georgetown University Medical Center, shared insights on multiple data-driven projects, including the Teraworld Registry for thoracic cancer patients, an AI tool for organizing COVID-19 scientific data, and an immunogenomic registry comparing immune responses between different coronaviruses.<br /><br />4. <strong>Jesse Tenenbaum</strong>: Chief Data Officer for North Carolina’s Department of Health and Human Services, spoke about automated medical surge data collection, emphasizing the adoption of standards and public-private partnerships to streamline data reporting from hospitals.<br /><br />5. <strong>Dr. Tal Bennett</strong>: Representing the National COVID Cohort Collaborative (N3C), he detailed the rapid development of a multicenter clinical data repository leveraging federated data models and partnerships across academic and community health centers.<br /><br />Discussions during the Q&A segment touched on data standardization challenges, the importance of inclusion of community health data, data governance, and the sustainability and post-pandemic application of these newly developed infrastructures.<br /><br />Overall, the webinar underscored the critical need for rapid data collection, standardization, and collaboration across health systems to effectively respond to health crises and highlighted the importance of supporting and scaling these efforts for future healthcare improvements.

Keywords

clinical registries

COVID-19 pandemic

health data systems

data centralization

manual data collection

AI tools

immunogenomic registry

data standardization

public-private partnerships

multicenter data repository

data governance

health crises response

future healthcare improvements