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. 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.” Another responded: “My experience was incredibly disappointing; I never received the study results.”
This is problematic for three main reasons. First, it leaves participants feeling unsatisfied with their experiences in research, which results in attrition and less willingness to participate in research in the future. Second, 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. Finally, 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 comprised of previous clinical 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.