#TalkClinicalTrials: Bring Your Lived Experience to Clinical Trials in Ontario

March 01, 2023

Clinical Trials Ontario (CTO) partners with patients and the public to bring lived and living experiences that inform our own initiatives, help raise public awareness of clinical trials, and support researchers in their interactions with patients and families around clinical trials.

We have developed unique models of engagement to ensure these partnerships are meaningful, accessible and effective including the CTO College of Lived Experience. Members of the College of Lived Experience reflect the diversity of patients and public who are interested in clinical trials in Ontario. The College is not disease or condition specific, and the group is large enough that members can decide which projects to participate in or not. To our knowledge, it’s the only group of its kind related to clinical trials in Ontario or Canada.

What does the College of Lived Experience do?

The College advises CTO on current topics and issues about clinical trials and CTO-led projects, to ensure that patient and public perspectives are incorporated into CTO’s work.

The College also serves as a resource for the clinical trials community, collaborating with investigators, industry, and others on clinical trial teams to better reflect the patient and public experience as they design and conduct clinical trials.

A few of the projects the College of Lived Experience has worked on include the following. You can click on each to be taken to the resource or project page.

Read about the work that the College of Lived Experience did with the Princess Margaret Cancer Centre’s VIRTUOSO project here.

Interested in clinical trials? Join the College of Lived Experience

CTO is currently seeking additional members for the College (see here for how to express your interest in joining). You do not need to know about clinical trials or to have participated in a clinical trial to be involved – as long as you are interested in clinical trials and live in Ontario there may be a role for you. While many of the current College members live with a health condition or are caregivers to those who do, this is not a requirement to be a member of the College.

What College members feel about their experiences

“Working with the College of Lived Experience has provided not only a unique opportunity to contribute to discussions and new directions for clinical trials influenced by the patient/caregiver community perspective, but it has highlighted the importance of that contribution. It has ensured a level of confidence that many are seeing and recognizing the important role the patient/consumer can play.” – Donna Lillie

“As a member of the College of Lived Experience, I had the opportunity to collaborate with like minded patients and caregivers and provide impactful input on a variety of initiatives that will help to elevate the clinical trial experience and outcomes of patients and their families during this stressful period. Our collaborations were well facilitated, respectful and engaging, a wonderful “two way“ learning experience for all!” – Terry Hawrysh

“It’s been a very positive experience. It’s been an opportunity to connect with other patients and caregivers from across Ontario with very different experiences from my own.” – Maureen Smith

If you’re interested in being a member of the College, please submit an expression of interest to us by March 26, 2023. If you have any questions at all about the process, please contact Dr. Dawn Richards, Director of Patient and Public Engagement at dawn.richards@ctontario.ca.