Webinar: Practicing Open Science With Sensitive Data

Contrary to popular belief, researchers working with intellectual property, at-risk populations, or other sensitive data types can still contribute to open science. As a follow-up to previous webinars on data de-identification, this month’s Fresh FAIR webinar will feature HEAL Stewards Liezl Mae Fos, Zixin Nie, and Rashonda Lewis introducing unique and less commonly addressed sensitive data types involved in HEAL research. Presenters will emphasize how researchers can achieve and maintain balance between FAIR data sharing and the integrity of sensitive data. Participants will also learn about resources and initiatives relevant to this critical balancing act in the effort to advance scientific discovery around pain and opioid use disorder. The webinar will conclude with a live Question and Answer session.

Liezl Mae Fos, M.S., is a HEAL Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led and academia-focused clinical research trials. Working previously for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed. She has worked closely with PIs to ensure that study visits and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Steward, Fos integrates her background to support investigators in the HEAL ecosystem by providing guidance and strategy for data management.

Zixin Nie, M.B.A., is a data privacy specialist and HEAL Steward working within the Center for Data Modernization Solutions at RTI. He has more than 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).

Rashonda Lewis, J.D., M.H.A., is a data governance and privacy specialist in the Center for Data Modernization Solutions at RTI. She is an expert in best practices for compliant and collaborative data sharing within research, public health, clinical, and community settings. Her skills include application of best practices for sensitive data exchange, development of data governance frameworks, metrics, processes and tools, regulatory and legal landscape assessments, and data exchange partner engagement. She currently co-leads the ADC Privacy Preserving Technologies Phase 1 Environmental Scan Project, serves as a governance and privacy subject matter expert with the HEAL Stewards, and is the Governance and Working Group Task Lead for the NIH Cloud Platform Interoperability (NCPI) Project.

For More Information, Contact:

Julie Hayes at [email protected]

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