Whitepaper

Data Return Series: Installment 2: Ethics of Individual Participant Data Sharing

Patients in clinical trials expect to receive data and results, similar to other healthcare settings, but this often doesn’t happen, leading to frustration. To address this, our latest installment, brought to you by Legacy Health Strategies, provides critical considerations for sponsors on sharing research data and results with participants, fostering trust and transparency.
  • Data Return
  • Participant Engagement
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What you’ll find inside

  • The ethical case for returning data to patients - grounded in foundational research ethics frameworks and shifting participant expectations
  • Four key areas for responsible data return - from clear communication to enterprise-wide consistency
  • Four strategies to move from principle to practice - building the business case, engaging patients early, and starting simple to scale
“It is time to prioritize the ethical return of individual results to clinical trial participants.”
Joseph Kim, Chief Strategy Officer, ProofPilot

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