UC Research Data Privacy Summit

By Invitation Only – Registration Closed

Data Privacy Throughout the Research Lifecycle

UCOP’s ECAS, RPAC, UC Legal, and UC Health are thrilled to announce that registration is now open for the UC Research Data Privacy Summit. The summit will bring together IRB directors, research compliance, health and campus privacy, contracts and grants officers, legal counsel, and other stakeholders to address common issues and identify processes, gaps, and potential solutions as we look at data privacy throughout the research lifecycle.

Summit Agenda

Welcome – Deborah Motton, Irene Levintov (9:00-9:15)

Primer – Part 1 – Considerations in Preparing a Research Study - Hillary Kalay (9:15-10:00)

Breakouts – Part 1 (10:15 – 12:15)
Each group will spend 20 minutes discussing the first topic, reconvene with the large group for report outs for 10 minutes, and then rotate to the next topic with the same group to discuss and report out until we finish all three topics.

• Topic 1: De-identification, anonymization, and related terms: How are campuses defining these terms and applying them to various types of research with various types of data. Is it practically feasible to de-identify certain data (e.g., genetic data, medical notes)?
• Topic 2: Considerations concerning research governed by U.S. privacy laws besides HIPAA (e.g., FERPA, CMIA, IPA): What challenges have campuses navigated regarding research uses of employee and student Covid-19 data gathered for public health safety reasons in the university and workplace settings?
• Topic 3: Privacy review of research using HIPAA Limited Data Sets: What is the process used by campuses? Who reviews research that requires a HIPAA Waiver?

LUNCH (12:15-1:00)

Primer – Part 2 – IRB Evaluation, Sharing Data, Study Conduct, Close-out and Future Research - Hillary Kalay (1:00 – 1:45)

Breakout Session – Part 2 (1:55 – 3:25)
Each group will spend 20 minutes discussing the first topic, reconvene with the large group for report outs for 10 minutes, and then rotate to the next topic with the same group to discuss and report out until we finish all three topics.

• Topic 1: Sharing PHI within a HIPAA hybrid entity: What safeguards and practices are in place to ensure compliant sharing of PHI by HIPAA covered components of UC with non-covered components of UC?
• Topic 2: Sharing RHI with sponsors and others outside of UC: How are campuses deciding what research data may be shared with sponsors (e.g., information on the case report forms) and others outside of UC? How can UC be a good data steward?
• Topic 3: Compound authorizations: What issues and advantages do they present? What have you learned and would you recommend to others?

Closing – Noelle Vidal (3:25-3:55)

We look forward to seeing you on the 27th of January!