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T-17: Making Clinical Trials More Patient-Centered: Results of a Key Stakeholder Engagement Workshop

Poster Presenter

      Meredith Smith

      • Senior Director, Implementation Science Pillar Lead
      • Evidera, Inc
        United States


Learn about methods to use in multi-stakeholder engagement with patients to re-design the clinical trial experience for patients; Gain insight, based on direct patient feedback, regarding the challenges and opportunities patients face when participating in the clinical trial journey; Understand ramifications for the design of clinical trials moving forward.



We conducted a workshop with patients, industry researchers, healthcare professionals, educators and caregivers to explore how the pharmaceutical clinical trial process could be redesigned to improve the patient experience. The 1.5 hour workshop featured a ‘generic’ clinical trial journey divided into 4 stages: 1) gather information about clinical research; 2) consider clinical trial participation; 3) clinical trial participation; 4) continuing on the healthcare journey post-trial. Using a multi-method elicitation approach, participants engaged in individual and group brainstorming activities to identify challenges/opportunities for improving each stage of the journey, and then ranked them to identify priority topics for improvement. Results were then analyzed to identify major themes.


Workshop participants included 6 patients, and 10 other stakeholders. Participants generated 56 challenges/opportunities for Phase 1, 71 for Phase 2, 67 for Phase 3 and 35 for Phase 4. Working in small teams, they then nominated the top 3 challenges/opportunities for improvement. Emergent themes were: 1) ensuring all interested patients had access to clinical trials; 2) covering all patient costs; 3) increasing the value to patients of trial participation; 4) establishing a collaboration among industry, researchers and patients to co-design the clinical trial; 5) improving the patient’s day-to-day trial experience; 6) ensuring full transparency to patients; and, 7) supporting the patient in resuming his/her healthcare journey post-trial.


Workshop results highlighted the fact that, while numerous challenges exist at present, there are multiple opportunities for improving the patient experience in clinical trials.