Overview
A rapid rise in malicious cyber activity and several well-publicized incidents at academic centers led UCSF leadership to determine that a thorough review of our data management and data sharing practices was necessary to ensure the appropriate protection of our data assets.
At the Chancellor’s request, a task force of research, technology, and operational leaders across the University reviewed how we share data with external partners and created a set of recommendations.
What to Expect
New contracts that propose data sharing with external entities are being closely reviewed by UCSF's five authorized contracting units. Data sharing agreements that meet any of the criteria below will be escalated by the contracting unit to the IT Governance Committee on Enterprise Information and Analytics (EIA) for evaluation.
This multi-phase project will unfold over several months. End-to-end value stream mapping of the external partnership process began in June 2019.
Escalation criteria
- Sharing any UC protected health information (PHI) outside of IRB-approved clinical trials.
- Sharing sensitive UCSF data (i.e. P3 and P4) with high-risk countries or companies
- Identified using Restricted Party Screening software from Visual Compliance® and information from government and law enforcement authorities (e.g. F.B.I.)*
- Sharing de-identified sensitive data (i.e. P3 and P4) with:
- Any commercial entity (domestic or international); or,
- Any colleges and institutes of higher learning outside of the U.S.
*The Visual Compliance Restricted Party Screening software is available to all UC employees. You may consider signing up if you are considering entering into a data sharing partnership.
P3 and P4 data types
High-risk countries
High-level process workflow
Task Force Recommendations
Based on its findings, the task force has created a set of interim and longer-term recommendations across contracting, technology, security, and data access areas that will help inform process change going forward.
Recommendations
Questions and Feedback
We want to hear from you and welcome your questions.
- General project questions: [email protected].
- In-process contract questions: email your specific contract specialist.
- If you might enter into a data sharing agreement but do not have a formal contract in place, contact one of UCSF's five authorized contracting units:
FAQ and Resources
If you have questions about sharing de-identified data to meet funder and publisher requirements, please review the guidance on the new page Sharing De-identified Data for Publication
The session "De-mystifying Data Sharing ... your questions answered by UCSF experts" from the 2020 Research Data Series provides an overview and practical dos and don'ts for data sharing at UCSF. You can watch the session or review slides.
Review frequently asked questions about the data sharing project. If you have a question that is not addressed, please email [email protected].
Task Force
| Name | Content Area | Title |
|---|---|---|
| Julia Adler-Milstein, PhD | Data Policy | Director, Center for Clinical Informatics and Improvement Research |
| Joe Bengfort | UCSF Information Technology | Associate Vice Chancellor and Chief Information Officer |
| Kirsten Bibbins-Domingo, PhD, MD, MAS | Population Health | Vice Dean for Population Health and Health Equity |
| Christy Boscardin, PhD | Education Research | Associate Professor, Department of Medicine |
| Michael Blum, MD (Task Force Chair) | Data Governance | Associate Vice Chancellor for Informatics, Chief Digital Transformation Officer |
| Katja Brueckner, PhD | Basic Science Research | Professor, Department of Cell and Tissue Biology, School of Dentistry |
| Atul Butte, MD, PhD | Institute for Computational Health Sciences | Director of the Institute for Computational Health Sciences and Executive Diretor for Clinical Informatics across the six UC Schools of Medicine and Medical Centers |
| Lisa Cisneros | Communications | Strategic Communications & University Relations |
| Lindsey Criswell, MD, MPH | Research | Vice Chancellor, Research |
| Russ Cucina, MD | Clinical Informatics | Vice President, Health Informatics and Chief Health Information Officer |
| David Dobbs | Enterprise Information | Executive Director, Data Warehousing and Analytics |
| Elizabeth Engel | UCOP | Chief Strategy Office |
| Jenny Grandis, MD | Clinical and Translational Science Institute | Associate Vice Chancellor, Clinical and Translational Research |
| Patrick Phelan | Information Technology Security | Chief Information Security Officer |
| Tom Poon, CHPC | Privacy Office | Interim Chief Privacy Officer |
| Greta Schnetzler | Legal | Chief Campus Counsel |
| Niraj Sehgal, MD | Clinical Quality | Professor, Department of Medicine |
| Barry Selick, PhD | Strategic Partnerships | Vice Chancellor, Business Development, Innovation and Partnerships |
| Brian Smith | Compliance | Associate Vice Chancellor for Research Infrastructure and Operations |
| Miriam Rike | Finance | VP Cancer Finance Services on behalf of Barrie Strickland, CFO UCSF Health |
| Ralph Gonzales | Research | Chief Innovation Officer |
| David Teitel, MD | Academic Senate | Chair, Academic Senate |