As part of CTO’s efforts to engage patients and the public with clinical trials, we are leading and actively participating in initiatives to build resources and tools to help the community work together. Some resources and initiatives are highlighted below.
From CTO’s 2018 Clinical Trials Conference
At CTO’s 2018 annual conference, there were two live-streamed sessions that were of greatest interest to patients and the public, entitled “Finding and Joining Clinical Trials – Experiences and Learnings” and “Exploring Models of Patient Engagement”. The full videos of these two sessions and slides from each presentation are available for download here.
Resources to Facilitate Patient Engagement with Clinical Trials
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.
CTO is leading the development of an initiative to build investigator capacity to engage patients with clinical trials and which has resulted in funding for a CIHR SPOR Collaboration Grant. The grant “Building Capacity for Patient Engagement and Patient-Oriented Research in Clinical Trials” includes Dr. Monica Parry (University of Toronto) as the Principal Investigator along with a team of patients, clinicians, researchers, and CTO. Over the next year, the team will work to develop a suite of technologies/tools/resources to build capacity for patient engagement, sex/gender uptake, and patient oriented research in clinical trial design and conduct. We will also host a 1-day new and early investigator patient oriented research training day in conjunction with CTO’s 2019 Clinical Trials Conference.
Scientific papers focus on patient input into clinical trials
Our experts recently co-authored two scientific papers focused on patient and public involvement with clinical trials.
Public perceptions of clinical trials
Little is known about the Canadian public’s perspective on clinical trials. CTO and Clinical Trials BC contracted IPSOS to survey 1,602 Ontario and British Columbia residents to determine their understanding of and willingness to participate in clinical trials. Read our journal publication: Survey of Awareness and Perceptions of Canadians on the Benefits and Risks of Clinical Trials. These insights are informing how we approach patient and public engagement with clinical trials in Ontario.
Developing tools for patient inclusion: colorectal cancer
CTO has been part of efforts led by Colorectal Cancer Canada to establish ways that patient organizations can be involved with the clinical trials process. The resulting paper, published in the Canadian cancer research journal Oncology, suggests that including patient groups as equal partners will generate significant benefits for all stakeholders – and outlines next steps. Read our paper here: Developing a model of a patient-group pathway to accessing cancer clinical trials in Canada.