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Return Participant Data

Opportunity

Clinical trial participants would like more data returned to them during and after participation in clinical trials; however, the frequency, timing and type of data returned to participants today is varied and inconsistent. This opportunity provides participants with the option of receiving their study data / results in the format and at the time they choose.

Considerations to Help Action the Opportunity

  • Address individual participant data return  issues early in the clinical development planning process 
  • Ensure security of participant privacy, confidentiality, flexibility and safety while maintaining scientific integrity and product approval timelines
  • Prioritize and personalize optionality in delivery and content as best as possible 
  • Provide support to sites, HCPs, participants and their care partners regarding management of individual data to optimize access, inclusiveness and health equity
  • Understand how digital technologies and existing cross collaborations can be optimized to facilitate interoperability of systems which collect and manage patient / participant clinical care and clinical research data

Value and Potential Benefits

  • Demonstrates respect and gratitude for the participant’s contributions to scientific advancements in research and development
  • Enhances patient partnerships and autonomy
  • Informs patients and increases awareness about clinical trials and enhances public trust, fairness and transparency 
  • Improves clinical trial engagement and the participant experience, potentially facilitating recruitment and retention
  • Utilizes a proactive approach to achieve operational efficiencies by being prepared for unplanned requests for individual data
  • Empowers participants to be more active decision makers when it comes to the use of the data they contribute to improve health outcomes
  • Reduces the burden on participants and health systems by reducing repeated testing / exams, where possible

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