Until recently, there has been very little research about the experience of patients and the public with the clinical trial process. The BC Clinical Research Infrastructure Network (BCCRIN) wants to change this by getting your feedback, especially from those who have declined to participate in a clinical study.
A clinical trial is a form of medical research that examines new ways to prevent, diagnose, and treat diseases.
A 2010 pilot study in BC found the majority of respondents who participated in clinical trials felt the safety risks were acceptable and that they were benefiting society by participating. The study also found that 77 per cent of participants felt they would have better access to health care services and 75 per cent felt their health would improve through their participation. Results also showed that 69 per cent of those who declined to participate in a clinical trial felt their health would not benefit and 55 per cent did not want to receive a placebo (inactive treatment). Respondents also cited inconvenience and a perception of potential danger as other reasons for choosing not to participate.
BCCRIN is launching a considerably larger study involving 1000 people across the province. The results will enable the clinical research community to target areas where more information is needed to address the public’s questions and concerns around participating in trials. ”Medical advances depend on people and it is up to us as a research community to listen and learn from the public,” says Dr. Robert McMaster, Vice President Research, Vancouver Coastal Health and Associate Dean of Research, UBC Faculty of Medicine.
If you have participated in a clinical trial, declined to participate or if you are the parent/guardian of a child who has been asked or has participated in a clinical trial, you are invited to fill out BCCRIN’s anonymous survey.
BCCRIN was founded in partnership with VCH Research Institute.