Clinical Trials Ontario is committed to engaging patients and the public with clinical trials. We are doing this by encouraging active involvement of patients and the public in CTO programming, raising public awareness of clinical trials, and supporting researchers and healthcare providers in their interactions with patients and families around clinical trials.
Working with patients, public partners, patient organizations and health charities is important to CTO because it brings a diversity of lived experience to our initiatives. We have been able create tools and resources that are useful, relevant and meaningful. And we have been able to reach communities (with specific disease interests or geographically) with our tools that we might not have otherwise.
In order to meaningfully involve patients and the public in the work we do, we have developed unique models of engagement, including the CTO College of Lived Experience and our work with Health Charities and Patient Organizations.
Looking to engage and support patient partners? Here are a few things we’ve learned:
|Have resources including a budget to support engagement. Resources may include a point person for all engagement activities, offering honoraria (individuals may or may not wish to receive it), covering travel and other expenses and more.|
|Be flexible. Think about creating opportunities to meet outside of regular business hours, allow for different meeting time options (or even hosting the same meeting on different dates and times to increase attendance), meet one on one with those who can’t make times that work for the majority, facilitate meetings to encourage everyone to engage in ways that work for them, and provide both in person and virtual options to participate in meetings.|
|Communicate clearly. Set context and timelines for project engagement, offer tailored information to patient partners at a level that makes sense for them (which may not be the same information and materials you would provide others such as researchers or clinicians), create online, closed message boards to keep communication accessible.|
|Close the loop. Let partners know about project results, outcomes and next steps based on their generous input and insights. Partners really appreciate knowing and seeing how their experiences and insights affect projects, and this is sometimes an overlooked, but important step to engagement.|
|Engage a large group so there isn’t pressure to participate. This allows more perspectives plus allows individuals to step back if their health or life require them to, or if they’re simply not as interested in the topic at hand.|
CTO’s College of Lived Experience was created to help advise CTO on current topics and issues about clinical trials for which patient and public input would be valuable. Members of the College reflect the diversity of patients and public who are interested in clinical trials in Ontario. The College is consulted on CTO-led projects to ensure the patient and public perspectives are incorporated. The College also serves as a resource for the clinical trials community, helping investigators or industry better reflect the patient and public experience. The College of Lived Experience is unique because it 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 in Ontario or Canada.
CTO works with a range of health charities and patient organizations interested in clinical trials. In addition to co-creating tools and resources with CTO that meet the needs of their communities, these organizations share information with their communities on clinical trials. This includes opportunities to: collaborate in research projects; apply to become a community representative on a research ethics board or an advisory group; attend conferences or events related to research and clinical trials; and learn about new resources that have been created about clinical trials. If your organization would like to collaborate with CTO, please contact us at firstname.lastname@example.org.
“I was thrilled when I learned about Clinical Trials Ontario’s Participant Experience Toolkit. Especially the fact that it was co-designed with patients and the people who will make decisions about using and implementing the Toolkit. Because what is the use of creating something that is impractical or doesn’t respond to patients’ needs?”