Protecting Privacy in HEAL Research: A Deep Dive Into Data De-identification

This month’s Fresh FAIR webinar features Zixin Nie of the HEAL Data Stewardship Group (HEAL Stewards) providing a deeper look into data de-identification, including how to determine what data to de-identify and appropriate de-identification methods based on institutional and HIPAA requirements, repository de-identification workflows, and data types. A brief recap of the previous webinar on de-identification will be provided, but you can check out the recording here for the full background: https://youtu.be/s3k-OzfzP5Y.  

De-identification involves removing personal identifying information from datasets so that no single individual can be identified as a study participant. This process is a critical step for protecting the privacy of human subjects involved in NIH HEAL Initiative® studies, as well as for defining the reusability of data for further analysis and discovery. Properly de-identifying data will enable accessibility and reuse by other researchers via the HEAL Data Platform, thus accelerating discovery around safe and effective treatments for those suffering from pain and opioid use disorders.

Zixin Nie will close by describing how you can take advantage of HEAL Data Ecosystem resources to assist with the process of de-identification. The presentation will be followed by a live Q&A featuring HEAL Stewards and HEAL Platform representatives, as well as Vivian Ota Wang (NIH), Amy Pienta (ICPSR), and Dan Janes (NIMH Data Archive).

Presenter Names and Bios:

• Zixin Nie is a data privacy specialist and HEAL Steward working within the Center for Data Modernization Solutions at RTI. He has over 7 years of experience working in data privacy. Prior to RTI, he worked at Privacy Analytics, a subsidiary of IQVIA, as a data privacy specialist, creating solutions for clients in industries such as health care, pharmaceuticals, advertising, technology, and government. He is experienced in data de-identification and anonymization, privacy impact evaluation, privacy by design principles, and has performed expert determinations under the Health Insurance Portability and Accountability Act. He is an active holder of the Certified Information Privacy Professional/United States (CIPP/US) certification from the International Association of Privacy Professionals (IAPP).

Tags: public, webinar, data sharing, FAIR data, FAIR, de-identification, data sharing