C1. Best Practices for Sharing the Research Experience with Participants Taking Part in Clinical Trials<span style="color:#0020C2">…more</span>
14:30 - 15:30
In 2018, Clinical Trials BC completed the Canadian Clinical Research Participation Survey, a national project asking participants about their experiences taking part in clinical trials. It showed that many participants were left with unanswered questions both during and after the research study. This is problematic for three reasons: (1) it leaves participants feeling unsatisfied with their experiences in research, which results in attrition and less willingness to participate in research in the future; (2) Canadian Tri Council Policy Statement clearly states that informing participants of research results is as important as disseminating results to the research community; (3) the Canadian Institutes of Health Research acknowledges 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. Researchers have a responsibility to “close the loop” by communicating learnings to their participants; failure to do so may reduce the effectiveness, impact, and acceptability of their research in a real world setting.
To help solve this problem Clinical Trials BC, through the BC Academic Health Science Network, formed a working group of participants, researchers, ethics administrators, and decision makers to learn from each other and make suggestions for future clinical trials. We will present the topics we explored within the group and the communication practices we recommend for improving the experiences of participants taking part in clinical trials.
We acknowledge there are limitations to what information may be provided to research participants, and that the recommendations provided may not work in every situation. However, we believe that by applying these suggestions where possible, we can improve the experience of participants taking part in clinical trials, which may also lead to longer retention in a study and willingness for future participation.
Keywords: clinical trials, participant experience