In 2018, Clinical Trials BC completed the Canadian Clinical Research Participation Survey, a national project that asked participants about their experiences taking part in clinical trials. The survey showed that many participants were left with unanswered questions both during and at the end of the research study. As one participant explained: “I would have liked to have the study follow up to me directly about my results and the results of the over all study,” while another respondent stated: “My experience was incredibly disappointing; I never received the study results.”
This is problematic for three main reasons:
- It leaves participants feeling unsatisfied with their experiences in research, which results in attrition and less willingness to participate in research in the future.
- The Canadian Tri-Council Policy Statement clearly states that informing participants of the research results is as important as disseminating results to the research community.
- The Canadian Institutes of Health Research acknowledges that the impact of research on the health care system is directly related to effectively communicating research findings back to knowledge users, including members of the public that may be affected by those findings.
To help solve this problem, Clinical Trials BC formed a provincial working group of trial participants, researchers, ethics administrators, and decision makers to develop recommendations for communication practices to improve the experiences of participants taking part in clinical trials.
View an introductory webinar, held on April 22, 2021 featuring Anita David and Marc Saunders, on our YouTube channel.
An online toolkit is now available to support the awareness and implementation efforts within your organization to better communicate results with clinical trials participants.
Incorporating feedback from clinical trials participants and the areas they identified for improvement of their participation experience, a set of best-practice recommendations was created by a working group of research participants, researchers, ethics administrators, and decision makers. These recommendations have formed the foundation of this online toolkit, developed by Clinical Trials BC, which is now available to you.
An editable PowerPoint Presentation is also available. Please email firstname.lastname@example.org.
Tell us what you think of our toolkit!
How are you liking our toolkit resources? Are we missing anything, or can we change anything so that they're more easily shared with others? We'd love to hear about your experiences in a short survey. Your feedback will be helpful for updates and future planning. Thank you in advance!
For more information on the Toolkit, Best Practice Recommendations document and Working Group, please contact us.
Developed by the Clinical Trials BC Provincial Working Group, BC Academic Health Science Network *Licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. March 2020.