Privacy Puzzle: NOT A CURE-ALL: Is data tokenisation the solution for data sharing?

Clinical trials teams are under increased pressure to manage data that needs to be shared during studies, reused beyond the original purpose where appropriate, and retained for decades. Yet traditional clinical trial datasets can become detached from real-world outcomes over time, and may fail to reflect important factors that were unknown when the protocol was finalised.

Tokenisation is often positioned as the answer. It allows clinical trial data to be supplemented with real-world data (RWD), permits the participants to exercise dynamic and granular control over their participation, and grants sponsors the freedom to fine-tune data management over the lifetime of the trial.

But tokenisation does not eliminate data protection risk. It raises practical questions about transparency, consent, and long-term governance. For sponsors and CROs, the challenge is understanding where tokenisation genuinely adds value, where it introduces new risk, and the extent to which these benefits and challenges may impact the full lifecycle of a trial.

In the DPO Centre’s latest Privacy Puzzle webinar, we bring this debate into focus

Join session moderator, Ben Seretny, COO, Lawrence Carter DPO and Life Sciences Sector Lead, Pippa Scotcher, DPO, alongside an expert panel. Drawing on deep experience in clinical trials, data protection, and health data governance, the panel will share real-world examples of the pros and cons of tokenisation and how these choices impact both regulatory compliance and trial outcomes.

You’ll learn:

• How tokenisation fits alongside anonymisation and pseudonymisation, and how the EDPS vs SRB decision affects all three concepts in practice
• How tokenised datasets move the task of pseudonymisation from site to sponsor, and what that means for compliance and accountability
• The importance of explaining tokenisation clearly in informed consent forms, including how to address possible future secondary uses
• The data protection risks associated with selecting long-term third-party vendors, including negotiating contracts that may need to stand for 25 years or more

This session will close with an open Q&A giving you the opportunity to ask questions directly to the panel. If you’re responsible for trial data strategy or governance, this is a unique chance to learn from others facing the same challenges and understand whether tokenisation is right for your trials.

Register here