Patient Reported Outcomes in People Experiencing Lung Cancer (PROPEL)

Better understanding the experience of lung cancer patients to improve outcomes and quality of life

An Alberta-based research team led by Dr. Vishal Navani (University of Calgary) will receive $250,000 over the next year from the Marathon of Hope Cancer Centres Network, after being named one of the recipients of the Network’s Patient Voices in Research Initiative.

Funding from this award will support the launch of a new study called Patient Reported Outcomes in People Experiencing Lung Cancer (PROPEL). This study aims to provide evidence on how to improve lung cancer care by better understanding how patients and caregivers navigate their cancer journeys and what access they have to precision oncology treatments.

By combining patient-reported outcomes and real-world data about access to cancer therapies, the project will address inequities in access to life-saving treatments and provide critical insights to improve care for those affected by Canada’s leading cause of cancer-related deaths.

Read our Q&A with the research team to learn more about the project.

How would you describe your project to a lay audience? 

Lung cancer is the leading cause of cancer related death in Canada. While there are new treatments available, some patients struggle to access them because funding varies between provinces. Additionally, there's a lack of understanding about how a lung cancer diagnosis affects not just patients, but also their caregivers and families.

The PROPEL project aims to improve lung cancer management through the following goals:

• Understand Patient Experiences: Gather insights from lung cancer patients about their diagnosis and treatment using specialized tools.
• Evaluate Treatment Effectiveness: Assess how well new treatments work in real-life situations, especially for patients not included in clinical trials, and understand the impact of delays in accessing these treatments.
• Create a Knowledge Base: Use findings from the PROPEL study to justify increased access to effective new treatments and appropriate supports of people impacted by a lung cancer diagnosis. This project will also provide an update of the current disparities in access to precision medicine for patients with lung cancer across Canada.
  
  

What do you hope to achieve by the end of the project?

We aim to gather information to evaluate the impact on global wellbeing of a lung cancer diagnosis to both patients and their caregiving community. At the same time capturing the effectiveness of precision medicine treatments. This information will allow the identification of care gaps that contribute to inequities and distress. To achieve this goal, we will launch an accessible online patient-reported outcomes program and use Canada’s largest lung cancer database to investigate the effectiveness of lung cancer precision therapies. By combining both the lived experience and identification of treatments which improve outcomes, we hope to create a knowledge base which may be used to ensure that precision medicine is available, effective and equitable. This method of combining lived experience with clinical research may serve as a model for ongoing patient-centered healthcare decision making.

Why is this project important? How does it advance precision medicine for cancer? What potential impact could it have on patients?

This project aims to address critical gaps in understanding the impact of precision medicine for lung cancer at the regulatory, reimbursement, clinical, and patient levels. We intend to improve decision-making regarding the implementation of precision therapies, inclusive of the lived experience, to enhance the wellbeing of patients and caregivers. A key focus is the means to include the lived experience through the collection of patient-reported outcomes (PROs), which should be accessible and relevant for cancer patients and caregivers. Findings can be used to raise awareness among physicians and healthcare policymakers about the importance of prioritizing the lived experience of people with lung cancer and their caregiving community for both clinical and healthcare system decision-making in Canada.

This funding opportunity was designed and adjudicated by members of the Network’s Patient Working Group, who are all cancer patients and survivors or caregivers and family members. Why do you think it’s important for the Network to fund this type of patient-centric research? Have you ever encountered a funding opportunity like this before? 

A cancer diagnosis transforms individuals into "patients" and their families into "caregivers," each navigating lung cancer management in their own distinct ways. Although precision medicine customizes treatments based on genetic and clinical factors, it frequently overlooks the personal experiences and beliefs of patients and caregivers and the impact these factors have on well-being. This innovative funding model empowers them to share their experiences, promoting a more active and consistent inclusion of patient and caregiver insights in cancer management. Ultimately, these findings can enhance the collection and use of patient-reported outcomes to improve cancer care across Canada.