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SCOPE 2023: Preserving Data Privacy while Empowering Access to Clinical Data

From the SCOPE Summit for Clinical Ops Executives 2023 – Orlando, Florida

by Dr. Ed Ramos, PhD, Co-Founder of Digital Trials Center, Scripps Research / Chief Science Officer, CareEvolution

The decentralized, digital clinical trial (DCT) model has brought a significant shift in how we conduct research. By meeting participants where they are and providing access for anyone, anywhere, digital clinical trials offer a study design that can provide real-world context as well as multi-modal data collection through survey responses, wearables, electronic health records, and other digital health technologies. Compared to traditional clinical trials, a number of innovations can be brought to the participant experience through a digital-based DCT, however, data privacy remains a priority. We will discuss the data sharing touchpoints we have with participants, how we implement strategies to support data privacy, and the return of information back to participants towards empowering them through their own, personal health insights.