Minutes: Research Data Systems Steering Committee

December 19, 2007

In attendance:  Ron Arenson, Michael Blum, Karen Butter, Russ Cucina, Aaron Gannon, Stuart Gansky, Deborah Grady, Jim Kahn, Michael Kamerick, Wendy Max, Teri Melese, Christine Miaskowski,  Geraldine Padilla, Richard Schneider, Jonathan Showstack, Ida Sim, Yao Sun

Absent:  Andrew Bindman, William Bird, Jeff Bluestone, Ben Davoren, Tom Ferrin, Clay Johnston, Geoffrey Manley, Thomas Newman, Neil Risch, Wade Smith, Margaret Tempero, Michael Williams, Ann Williamson

Please let Gail Harden know if you were on the phone and are not listed above.

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Secure Data Environment (SDE):

Status: 

  • The SDE has been created and initial pilot users have been set up with secure sites. Discussions are in progress with other researchers to use the environment.
  • The SDE service will be free to researchers this fiscal year. ARS proposes to begin charging for SDE in July. A linear pricing proposal based on the number of users and file size was discussed. The goal is to have agreement on the pricing structure in time for researchers to include the cost in grant proposals.
  • An issue was identified regarding the ability to pay for the SDE on closed studies once the funding is stopped. One suggestion is to prepay for archival storage in SDE as part of the grant. Archival storage may be supported by core ARS funding.
  • The Committee on Human Research (CHR) is considering making secure storage of research data a requirement.  
  • There is a possibility that Core services could pay part of the cost, including archival costs.

Integrated Data Repository (IDR)

Status: 

  • Four phases for the implementation of the IDR, each six month apart, have been identified. 
  • A test environment is operational
  • The database structure is currently being designed. 
  • An architect and a developer has been hired

· The proposed Phase I of the IDR is to include UCare, the UCSF clinical data system, and PICIS, the Perioperative system. UCare includes data from many ancillary systems as well as some Admit/Discharge/Transfer data. UCare does not include diagnostic coding. Inpatient ordered medications will be included in UCare as text, but not coded data, in the near future.

· A grid showing source system prioritization based on Value/Utility and Feasibility of obtaining the data was reviewed.

· Historical data: It was suggested that the three most useful types of historic data are labs, coded diagnoses and demographics. Academic Research Systems (ARS) will investigate the potential sources for this data.

Data Access Working Group (DAWG)

· A security model was presented to the DAWG. The model included creating a working environment for the data rather than allowing downloads. The DAWG agreed with the expected benefits of this approach, however, concerns were also expressed about the practicality of working in such an environment. Issues raised included the ability to analyze the data with a tool not available in the IDR, and sharing data on multi-institutional studies.

· It was agreed that a set of principles needs to be defined.

Data Usage and Control Working Group (DUC WG)

· The group is considering issues with data from pure research as well as clinical data.

· Looking at fourteen example scenarios, the group has drafted proposals for seven high level principles so far, five for clinical data and two for research data.

· Medical Center policies will supersede IDR policies.

· The issue of patient derived and owned data should also be considered.

AISB

· The AISB is drafting a strategic plan and is establishing a parallel committee to the RDSSC called the Education Systems Advisory Committee.

Next Meeting:

· The next meeting will be scheduled for February. Please send suggestions for agenda items to Ida Sim, Mike Blum or Gail Harden.

Action Items:

· Michael Kamerick will write a description of the SDE to include in grant proposals and to post on the CHR web site.

· Michael Kamerick will add the appropriate phase to the Prioritization grid and also add a glossary slide.

· Michael Kamerick will provide information on the effort needed to obtain the above identified historical data.

· Deborah Grady and Michael Kamerick will confer on the prospect of Core Services paying a par of the SDE charges.