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Global Clinical Trial Disclosure and Data Transparency Conference

Learn about the latest global requirements in clinical trial disclosure and data transparency, share best practices, and engage in in-depth discussions on hot topics.

Session 11: Valuing Patient Input into Clinical Trials

Session Chair(s)

Deborah  Collyar

Deborah Collyar

  • President
  • Patient Advocates In Research (PAIR), United States
Historical approaches to clinical trials created challenging issues, including exceedingly low patient participation and too many uncompleted trials. There are many reasons for this, including focus on advancing the market instead of science, ultimately relegating real patient priorities to talking points rather than representing the true goal. Patients and their organizations are changing this by taking a more direct role in clinical trial development and implementation.
Learning Objective : At the conclusion of this session, participants should be able to:
  • Discuss the various ways that patients influence clinical trials
  • Assess why patient-provided data is critical and how it effects clinical trials
  • Describe how public study result summaries can be used with patients and providers


Deborah  Collyar

How Patients are Influencing Clinical Trials

Deborah Collyar

  • President
  • Patient Advocates In Research (PAIR), United States
Patty  Spears

Why Patient-Provided Data is Critical and How it Effects Clinical Trials

Patty Spears

  • Research Patient Advocate
  • University of North Carolina At Chapel Hill, United States
Catina  O'Leary, PhD

Opportunities to Use Health Literate Information for People and Providers

Catina O'Leary, PhD

  • President and Chief Executive Officer
  • Health Literacy Media (HLM), United States
Elizabeth  Roberts, MSc


Elizabeth Roberts, MSc

  • Data Policy and Privacy Lead
  • UCB Inc., United States