caBIG® Data Sharing and Security Framework (DSSF) Web-cast Materials

The DSSF Web-cast took place on May 16, 2008 and provided an excellent opportunity for staff with responsibilities for regulatory, proprietary and security matters to learn about the DSSF and its supporting tools. Knowledge of the DSSF and its associated tools is critical to successful implementation of the DSSF Bundle. For those who were unable to attend the web-cast, or who would like to review the materials covered during the presentation, the web-cast slides and links to the recorded sessions may be found below:

DSSF web-cast slides: Presentation

DSSF web-cast recording:

• Session 1 (50 minutes)
• Overview
• Introduction to the DSSF Bundle: Highlights implementing tools, such as model documents, policies and procedures to help researchers and their institutions address barriers that they may encounter as they move forward in sharing data.
• The caBIG® Trust Fabric: Outlines caBIG® Security Framework policies and procedures including authentication/identity management issues and authorization/privilege management issues.
• Session 2 (42 minutes)
• DSSF Decision Support Tools: Overview of tools designed to facilitate analysis and understanding of the nature of any mandatory restrictions on data sharing and agreements, and actions that can be taken to facilitate proposed exchanges by eliminating or reducing those restrictions.
• Session 3 (41 minutes)
• Other DSSF Resources: Highlights other DSSF resources, including policies and procedures, guidance and best practices, model agreements and other documents, and decision support tools.
• Future State of DSSF: Details some DSSF resources in development.

Materials discussed during DSSF Web-cast

Updated versions of many of the materials discussed during the DSSF web-cast may be found below and on the DSIC Knowledge Center website. Visit the DSIC Knowledge Center often to make sure you have the latest materials.

• Data Sensitivity Evaluation Framework
• Data Sensitivity Decision Flowchart
• Decision Support Tools
• Human Research Considerations
• Privacy Considerations
• Contractual Considerations
• Intellectual Property Considerations
• Guidelines for Preparing Data Sharing Plans
• Informed Consent Tools
• Draft Model Informed Consent Form: DSIC Workspace members have developed this DRAFT combined informed consent and HIPAA authorization template to facilitate specimen and data collection and sharing for research. The document is a living document and will be further developed and revised over time. The posting of this document is not intended as an endorsement by any agency or individual but instead is a tool that may be adopted or adapted by researchers and research institutions at their discretion.
• caBIG® Plug-in Language: Researchers who would like to use their own or their institutions' standard templates, but include language to facilitate data sharing via caBIG® and similar initiatives, might consider using the caBIG® plug-in language.

DSSF Bundle Feedback

The DSIC Knowledge Center welcomes feedback on existing tools and challenges not yet addressed by these tools. In particular, feedback is encouraged in the following areas:

• How each tool was used in your Center’s workflow or processes or was otherwise evaluated.
• What your Center found particularly useful or otherwise, unsuitable, about the tools that affected your ability or willingness to adopt the respective tools into your Center’s processes going forward.
• How the tools could be modified to make them more useful in your Center’s processes.
• Whether the information contained in the tools was consistent with your Center’s policies and procedures or, if not consistent, how the information conflicted.

For more information on how to implement the DSSF, contact Alex Kanous, DSIC Knowledge Center Operations Manager, at akanous@umich.edu.