An engaged group of participants attended an innovative workshop on May 7 called “The Participant Voice: Shaping the Clinical Trial Experience.” Co-hosted by Clinical Trials BC and Island Health Research, the Victoria event invited previous and current clinical trials participants to share their perspectives around the findings of the Canadian Clinical Research Participation Survey.
Patient partner speakers Melanie and Stephen Reid kicked off the event with practical insights about how not to run a research study, including lack of wayfinding and visits that go much longer than anticipated. They also shared positive experiences and highlighted their appreciation in receiving personal results, such as brain scans, in addition to being notified of journal publications.
The workshop featured six roundtable topics: Study Communications; Burden of Study Requirements; Convenience; Compensation; Connection with Study Team; and Informed Consent Process. The discussion made it clear that trial design, recruitment and trial conduct must consider all aspects from the participant’s perspective and that each component will affect peopleâ€™s willingness and ability to take part.
This work will inform further survey analysis and knowledge translation activities including manuscript development. In addition, a provincial small working group is being formed to address the most pressing issue: lack of communication of study results to participants. If you’re interested in helping shape new recommendations, please contact Alison Orth firstname.lastname@example.org.