Data Sharing Workgroup

 

Data Sharing Workgroup Membership

Co-chairs:

Joseph Erdos
Michael Raffanello

Core Members:

Amy Burns, Project Manager
William Roddy (WRNMMC/USU) (HJF, CTR)

 

Demonstration Project Membership

Project #11, Susan Hastings and Steven George, Principal Investigators

Kelli Allen

Project #12, Karen Seal and Will Becker, Principal Investigators

Brian Borsari, Carolyn Greene, Yongmei Li

Project #13, Christine Goertz, Principal Investigator

Cynthia Long, Jon Lurie

Project #14, Julie Fritz and Dan Rhon, Principal Investigators

Jacob Kean, Richard Thorp

Project #15, Alicia Heapy, Principal Investigator

Alicia Heapy

Project #16, Marc Rosen and Steve Martino, Principal Investigators

Qing Zeng

Project #17, Stephanie Taylor and Steve Zeliadt, Principal Investigators

Rani Elwy

Project #18, Jeffrey Goodie and Donald McGeary, Principal Investigators

Allison Hancock, Stacey Young-McCaughan

Project #19, Diana Burgess, Principal Investigator

Brent Taylor

Project #20, Brian Ilfeld, Principal Investigator

TBN

Project #21, Shawn Farrokhi and Christopher Dearth, Principal Investigators

Elizabeth Russell Esposito

 

Workgroup Co-Chairs – Qualifications and Experience

Joseph Erdos, MD, PhD, was the VACHS Chief Information Officer from 1995 to 2011 and was a member of the VA Chief Information Officers Council. He was instrumental in the early design and implementation of the VistA EHR system into care in 1999 as well as VistA Imaging. A demonstration project on Telemedicine at VA Connecticut led to the development of home telemedicine in the VA. In 2011 Dr. Erdos was tasked with development of the VA’s Corporate Data Warehouse (CDW), a repository of standardized mapped, accessible, EHR data for operations and research. He was promoted to serve as Director of the VA East Coast Business Intelligence Service Line of the Office of Information. He and his co-directors have overseen the conception and implementation of the VA CDW which has extracted and modeled over 50 clinical and administrative domains from approximately 150 VistA platforms resulting in approximately 2 trillion rows of data!

Michael Raffanello is a proven military leader and Information Technology (IT) manager with over 38 years of experience in IT project management, data management, information assurance, system security and compliance. He is in step with cutting-edge technologies and is a highly skilled communicator who builds cohesion and project engagement across all levels of staff, management, vendors, and customers. He has experience with DoD IT security and information systems as well as commercial experience and most recently VA experience. Currently, he supports the National Enterprise Service Line, Service Support Department, National VA My HealtheVet program (the VA’s personal health record for veterans), and is the lead Project Manager of the national VA Personal Identity Verification (PIV) program. He has worked with Dr. Erdos for over 5 years, with VA EHR data security, privacy and software solutions for the East Coast, and led information security strategies, security architecture, data management and coordination of security efforts related to patient, provider, employee and other confidential and sensitive information.

Workgroup Goals

This Data Sharing workgroup will address a wide array of issues related to planning, designing and implementing the Demonstration Projects, including data and software sharing plans, and the data standards that will be required for the study implementation, execution and conduct. Monthly teleconferences will provide a forum for discussion of informatics challenges and solutions across projects. This workgroup will seek to harmonize data sharing standards and templates while developing best practices and guidelines for data sharing.

Additional Value-added Expertise

The PMC3 team has a strong record of preparing and submitting data to NIH shared repositories. Drs. Dziura and Brandt oversee the submission of data to the National Database for Autism Research (NDAR) for the ABC-CT, a collection of over 20 forms with 10,000 fields. Dr. Peduzzi, while director of the VA CSPCC, oversaw the submission of data to a NIDDK repository for the Acute Renal Failure Trial Network study (n=1124), co-sponsored by VA and NIDDK. YCMI staff are responsible for the regular submission of data to the National Alzheimer’s Disease Research Center (NADRC) repository. Dr. Dziura also oversees the YCCI/YDCC Cinicaltrials.gov Unit that manages accounts and that registers and reports results for studies conducted at Yale. Since its inception in 2012, the Unit has registered 327 trials and reported results for 91. Drs. Erdos, Brandt, and Justice, with advice and assistance from Dr. Wright and M. Raffanello, have successfully shared EHR cohort data from VA subjects outside of VA.