National registries offer tools to measure and improve care, conduct novel research studies, and participate in federal quality reporting programs. There are now over 100 federally Qualified Clinical Data Registries in the United States, and many more local and statewide registries. At a time when the need for registries is growing, so too are the legal and regulatory challenges. In this session, we will provide examples of novel quality improvement efforts and research studies emerging from U.S. registries that are led by UCSF investigators. The session will highlight the types of data that are available to researchers and also data available to institutions for quality improvement efforts. We will also explore the legal and regulatory challenges in transmitting patient data outside UCSF for registry participation. University leadership will discuss ongoing work to clarify privacy issues, data ownership, and liability risks to help frame UCSF’s approach to registry participation in the coming years.
Slides: https://ucsf.box.com/s/4qi8zquyq8stn2bpo486ai4seypv4p84 (MyAccess login required)
This session is designed to be accessible to both a general audience interested in the topic of data sharing and national registries and to the more seasoned researcher who is participating in a registry or using registry data.
The speakers are faculty in the Department of Medicine at UCSF. Dr. Yazdany is Professor and Chief of the ZSFG Division of Rheumatology, Dr. Schmajuk is Associate Professor and Interim Chief of the VA Division of Rheumatology, Dr. Seghal is Professor and Vice President & Chief Quality Officer for UCSF Health. Mattice Harris is an Enterprise Solution Architect.