#TalkClinicalTrials: Maureen Smith’s Experience
Clinical trials have undeniably been transformative experiences in my life. It all began at the age of eight with an ultra-rare endocrine disease diagnosis and participation in the first small longitudinal clinical trial for my condition over the next ten years. Monthly visits to the hospital, bi-yearly hospitalizations, and more poking and prodding than you can imagine were just part of my life. I had the benefit of being under the compassionate care of the same research nurse and several devoted endocrinologists. There was much learning along the way as the natural history of the disease was being written as I was living it. After that successful trial, I experienced more than 20 years of decline, and I was unfortunately learning what it was like to not have access to clinical trials. This experience was also transformative, but in a negative way. Finally, at the age of 40, the outcomes of a clinical trial turned everything around and again and I experienced the joy and gratitude of a positive transformative experience.
After a seven-year period during which my body readjusted to treatment, I decided it was time to give back and become an engaged patient, as I had been during my childhood. My first foray into the patient advocacy world was to be the first lay person on the Inter-Agency Advisory Panel on Research Ethics. Over the past 20 years, since the clinical trial I participated in at age 40, I have been involved in a number of provincial, national and international projects, committees and advisory groups. However, nothing has been more satisfying than the work I do as a patient partner on several research studies.
Be it sharing my lived experience to make certain that patients have a voice in research studies, collaborating with research teams as a patient engagement advisor to ensure that other patients and families are empowered to provide their perspective on trials that better fit their needs and reflect what “value” means to them, or co-designing patient-oriented research as a principal investigator, the little girl who embarked on a ten-year journey has come full circle. That sense of hope and the understanding of the importance of the clinical trial that I experienced so many years ago as a participant still shines brightly, but now I see the transformative experience of clinical trials through the eyes of engaged patients and caregivers who are involved in the design, conduct, and dissemination of the clinical trials that truly meet their needs.
CTO wishes to thank Maureen for sharing this experience as part of #TalkClinicalTrials, a campaign led by Clinical Trials Ontario with support from many voices to build awareness of clinical trials. Why? Because clinical trials matter to all of us. They help to generate better treatments and technologies and ultimately help shape the future of medicine. Engagement from patients and the public is critical to shape and conduct high-quality clinical trials.
Clinical Trials Ontario can help you navigate clinical trials
Are you thinking of engaging with clinical trials? We have tools and resources that can help. Use our Clinical Trial Finder tool to find open clinical trials in Ontario or across Canada. You can search by disease, location or demographics. Use our educational modules to learn more about what clinical trials are and what you should know before engaging with one.