Minutes: Research Data Systems Steering Committee

June 15, 2007

In attendance:  William Bird, Jeff Bluestone, Mike Blum, Karen Butter, Russ Cucina, Tom Ferrin, Stuart Gansky, Deborah Grady, Jim Kahn, Michael Kamerick, Geoffrey Manley, Teri Melese Thomas Newman, Geraldine Padilla, Richard Schneider, Jon Showstack, Ida Sim, Yao Sun, Michael Williams

Absent:  Ron Arenson, Andy Bindman, Ben Davoren, Clay Johnston, Wendy Max, Christine Miaskowski, Neil Risch, Wade Smith, Margaret Tempero, Ann Williamson

Please let Gail know if you were on the phone and I did not capture your attendance.

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Overview of Global Strategy:

Michael Kamerick presented an overview of Academic Research Systems (ARS) within the Office of Academic and Administrative Information Systems (OAAIS).  

Current initiatives within ARS are:

  •  Integrated Data Repository (IDR)
  • Secure Data Environment (SDE)
  • Clinical Data Reporting
  • Honest Broker Service
  1. Server Hosting

The attached PowerPoint presentation provides additional detail on these initiatives. Also attached is a slide showing the data sources for the Medical Center’s Clinical Data Warehouse and the Integrated Data Repository.

In addition, UCSF is hosting the Biomedical Research Institutions Information Technology Exchange conference in October and is active in the CTSA data repository sub-group.

There was a general discussion of several generic topics that will need to be addressed as IDR and other ARS initiatives are created and implemented.

Data Security and Human Subjects Research:

  • Jon Showstack and Sharon Friend of the Committee on Human Research have begun discussions about policy and procedures for researchers related to data security as they pertain to services offered by ARS.
  • CHR will likely soon begin requiring Principle Investigators to provide a description of data security in their research proposals. 

Data Standardization:

  • Standardization of data nomenclature is an important long-term goal of IDR.
  •  Michael K has been leading a CTSA-wide approach to data repository development, including issues of infrastructure and standardization.
  • There was a discussion of current systems, including SNOMED, and NCI’s LexBIG and LexGrid.
  •  Please see the attached data standardization slide. 

Data Validity:

  • The quality of the level of data in the Medical Record can be questionable and will not improve with a new system. 
  • There was a discussion of the differences in quality among various sources of clinical data.
  • · The database design of the Medical Center’s Clinical Data Warehouse will be different from the Integrated Data Repository.

Data Ownership:

  • Data in the Integrated Data Repository will be derived from a variety of sources including Medical Center core systems, non Medical Center systems (i.e. shadow EMRs), affiliated hospitals and outside sources (e.g. Kaiser). The issues of who owns the various types of data will be technical, procedural, cultural and political.
  • To address these issues, the RDSSC decided that a working group led by Russ Cucina will be formed to investigate data ownership issues and make a proposal for data ownership guidelines to the RDSSC. This proposed set of guidelines will provide requirements for and the operation of the IDR.
  • The draft charge for the working group is: The IDR Data Ownership and Responsibility Working Group will characterize the issues of ownership, control, and responsibility for the clinical and research data stored in the IDR, and provide to the RDSSC recommended policies and procedures to address these issues. 
  • The working group will be open to others outside the RDSSC. Suggestions include someone from the Academic Senate, perhaps the Chair of the Committee on Research, the Committee on Academic Freedom, and a Patient advocate. If you would like to volunteer to be on the working group, or suggest participants, please contact Russ Cucina (russ.cucina@ucsf.edu, 476-0726) or Gail Harden (gail.harden@ucsf.edu, 476-5768).

Next Meeting:

  • The next meeting will be scheduled for September. Please send other suggestions for the agenda to Ida Sim, Mike Blum or Gail Harden.  
  • In late summer Gail will send an ARS status update to the RDSSC.  She will include a time line for the Medical Center’s Clinical Data Warehouse project.

Attachments

Note: the documents are available on the SharePoint site at https://dmapp.ucsf.edu/sites/AIS/default.aspx (restricted)