Resources for Engaging Patients

The toolkit is meant to provide guidance, considerations and examples and references to inspire the community. In working with the clinical trials community (patients, participants, health charities, patient organizations, Research Ethics Board representatives, clinical research coordinators, researchers, industry representatives, and others), CTO has developed five topic areas in the toolkit: participant information and support, participant expense reimbursement, participant experience surveys, plain language result summaries, and thanking participants.

Click here to explore the toolkit. 

Co-led by CTO, a team of patients, researchers and investigators, as well as people involved in research networks, health charities and patient organizations developed these tools to build capacity and increase engagement of patients with clinical trials. These tools, called decision aids, are aimed at helping people decide if they are ready to engage with each other as part of a patient-oriented research team. One tool has been developed for patients and one has been developed for researchers and investigators.

Click here to access the decision aids. 

CTO has recently launched its College of Lived Experience, with members who are representative of the diversity of patients and public who are interested in clinical trials in Ontario. The College has been created to help advise CTO on current topics and issues about clinical trials for which patient and public input would be valuable. Members will support CTO in its efforts to ensure the patient and public perspective is respected and incorporated in relevant CTO activities. The College will also be a resource for the clinical trials community to engage in addressing their own needs related to patient engagement with clinical trials.

Click here to access more information about the College of Lived Experience. 

CTO has contributed to the development of the Patient Engagement Quality Guidance, through active participation in the Patient-Focused Medicines Development Initiative, an initiative that aims to develop guidance for organizations  working with patients throughout the medicines development lifecycle. This practical guide will help you plan, develop and assess the quality of patient engagement in your project and it was co-created with stakeholders across the medicines development spectrum through an iterative process that included a public consultation.

Clinical Trials Ontario (CTO) has developed a number of resources for organizations to use to help their own communities’ conversations about clinical trials and to provide trustworthy information to individuals to help them make informed choices with respect to clinical trials. All of these resources have been developed in collaboration with patients, patient organizations and health charities. This toolkit document has been developed to explain each of these resources so you can best determine if and how your organization would like to use them. While CTO is an Ontario-based organization, the information in the toolkit materials applies to clinical trials all across Canada.

Click here to access the toolkit. 

In 2019, CTO participated in a project which mapped patient engagement in research across organizations in Ontario. The project was commissioned by the Ontario SPOR SUPPORT Unit (OSSU) and executed by the Knowledge Translation Program at St. Michael’s Hospital – Unity Health Toronto.

Click here to learn more about the Catalogue. 

CTO played a role in the development of a model for Canadian patient group involvement with clinical trials. In collaboration with Colorectal Cancer Canada, a model was developed based on one developed by the Clinical Trials Transformation Initiative in the US. The model outlines all of the potential roles that patient groups may undertake in the clinical trials continuum. A publication summarizes this model and work continues to engage the Canadian clinical trials community on the implementation of this model.