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#TalkClinicalTrials: The VIRTUOSO Project’s Experience with CTO’s College of Lived Experience

#TalkClinicalTrials: The VIRTUOSO Project’s Experience with CTO’s College of Lived Experience

The following blog post was submitted by Rachel Taylor, Clinical Research Analyst at Princess Margaret Cancer Center and Lindsay Carlsson, Clinical Nurse Specialist at Princess Margaret Cancer Centre.


What is the VIRTUOSO Project?

The VIRTual Clinical Trials Navigation to Improve Outcomes for Princess Margaret Advanced SOlid Tumor Patients (VIRTUOSO) is a research initiative at Princess Margaret Cancer Centre that hopes to improve clinical trial access and trial related education for individuals living with advanced cancer in Ontario. VIRTUOSO is a three-phase study that aims to improve patient and provider awareness of clinical trials, and overcome barriers patients face when accessing clinical trials by:

  • Creating a digital platform with both educational resources and a searchable database of trials offered at Princess Margaret;
  • Developing an early referral process, where patients with advanced cancer are introduced to clinical trials program early in their treatment journey, and receive individualized virtual follow-up coordinated by a nurse navigator;
  • Implementing a new model of care for patients enrolled on a clinical trial that responds to their holistic needs.

Ultimately, these strategies aim to improve patient access to trials and increase their agency over their treatment decisions with the support of the clinical trials nurse navigator.

Lindsay Carlsson, a Clinical Nurse Specialist with the Phase I Program at Princess Margaret, is the nurse navigator on the VIRTUOSO project. Lindsay will work with referring oncologists across Ontario to meet with patients early in their cancer journey in an effort to improve trial awareness, reduce care fragmentation, and onboard patients to trials more effectively. For patients enrolled in a trial, the nurse navigator will support care coordination, and will regularly meet with trial patients in an effort to improve symptom management and their quality of life.

The VIRTUOSO team will be spearheading a pilot project to evaluate whether the nurse navigator role and early referral pathway impacts clinical trial enrollment, and improves the quality of life and satisfaction of patients enrolled on a clinical trial.

How were we introduced to the College of Lived Experience?

In an effort to gain patient feedback on the project, the study team connected with Dawn Richards, Director of Patient and Public Engagement at Clinical Trials Ontario (CTO) and with Dawn’s leadership, we were introduced with the College of Lived Experience .

In December 2021, the VIRTUOSO team held two workshops with members of the College. After a brief overview of the project, we went through various discussion topics that addressed several aspects of the project including the virtual platform, promotional videos, and the use of social media to promote this project. The goal of the workshop was to elicit feedback on the strengths of the project and areas for improvement.

How did the College of Lived Experience Inform the VIRTUOSO Project?

The feedback provided from the College was focused on three major areas including having patient partners join our study team, ensuring the project is accessible and has a human interface.

We will invite patient partners to engage and actively contribute to the VIRTUOSO project throughout all study phases. Initially, we built in patient engagement into the early phases of the project to inform the development and evaluation of our digital platform. Based upon the discussion during our workshop, our team now recognizes the value of including patient partners in all phases of this project. Specifically, involving patients as we develop our care model, as well as in our data analysis and interpretation of findings.

Accessibility is at the forefront of our design and development of educational resources, as well as inform our approach to community outreach and communication strategies. We will incorporate the use of closed captioning in all videos, as well as the ability to translate the closed captioning into multiple languages. We will create several types of outreach materials (both printed and web-based) to allow for greater accessibility across all Ontario communities and hospitals by collaborating with regional cancer centers.

The project will emphasize the use of a human interface where patients will have the ability to have direct contact with our team and access personalized resources. In our outreach media patients will have the direct contact of a team member. We will create mix media resources (i.e., videos, written segments, paper pamphlets) that will explain different aspects of the VIRTUOSO project, explore clinical trials concepts, and highlight key team members.

Our experience with the College was incredibly valuable to our team – highlighting the importance of patient involvement and creating the resources that are accessible, educational, and personalized.

The members of the College were warm, welcoming and their feedback was honest and insightful.  Members of the College have wide ranging experiences with different health conditions and clinical settings, which informs the perspectives they hold and the feedback offered. The shared purpose of the College focuses on improving the care of patients and families. This opportunity to collaborate with the College will shape how our project team moves forward.

We want to thank Dawn and CTO’s College of Lived Experience for engaging with our VIRTUOSO team, and their willingness to provide vital feedback. We are grateful for our sessions with them and look forward to connecting with the College again in the future to share how their feedback directed the path of our project.

 


 

CTO wishes to thank Rachel Taylor and Lindsay Carlsson for sharing this blog as a 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. Read more of the #TalkClinicalTrial blog posts here.

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