Co-designing an intervention to support people living with and beyond a metastatic cancer diagnosis

Addressing the unique needs of people living long-term with advanced cancer

A research team from Nova Scotia, New Brunswick and Newfoundland led by Dr. Robin Urquhart (Dalhousie University) will receive $115,000 over the next year from the Marathon of Hope Cancer Centres Network after being named one of the winners of the Patient Voices in Research Initiative.

The project will explore the unique challenges faced by individuals living long-term with advanced cancers, including persistent symptoms and uncertain prognoses. By gathering insights directly from patients, the team will co-design tools, resources, or programs tailored to support this growing population.

The findings aim to fill critical gaps in cancer care and improve quality of life for those navigating the complexities of long-term advanced cancer survival.

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

How would you describe your project to a lay audience?

Until very recently, most people diagnosed with an advanced cancer faced very poor odds of long-term survival. However, this is no longer the case for many of these people. This is because of improvements in what we call precision oncology, which allow us to better match cancer treatments to a person’s unique disease. For many people, including people with advanced lung, ovarian, breast, prostate, myeloma, and prostate cancers, these treatments have led to “unprecedented prolonged survival” for a large proportion of patients. Despite this tremendous progress, people living with advanced cancer often have distinct challenges such as a higher and persistent symptom burden, and the uncertainty of their outlook. Unfortunately, we have little information around how to best support and care for this growing population. In this study, we will first gather information from people with advanced cancer about their unique experiences and needs. We will then use this information to co-design tools, resources, and/or programs to better support the growing number of people living long-term with advanced cancer.

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

At the end of the project, we will have a personalized intervention (e.g., a new resource, tool, or program) that is co-designed with people who are living long-term with advanced cancer. The goal will be to test this intervention in a future research study. 

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

Although quite a bit of research has developed and tested interventions to help people recover after a cancer diagnosis and treatment, this research has been focused on people with early-stage disease who receive curative-intent treatment. The fact is very little research has explored the needs and experiences of people living long-term with an advanced cancer diagnosis, and virtually no research in Canada has focused on developing and testing interventions for this growing population – despite the fact that people with advanced cancer may have very different needs and challenges than those whose treatment has finished, and whose cancer is considered cured. This research will focus on developing, with people with advanced cancer themselves, an intervention to address their unique challenges and support their health and well-being while living with advanced cancer. Therefore, this research has the potential to directly impact patient’s lives and well-being as they live long-term with an uncertain prognosis.

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?

Patients and their families are the ultimate recipient of all of the research that happens in cancer. While all research is important, the fact is a lot of cancer research will either never make it to the point where it impacts patient care (or it will take decades to do so). The full spectrum of research is important. In this light, we need to fund research that addresses patient priorities and makes an impact on patients’ lives today, and not a decade from now.

Other cancer research funders have begun having people with lived and living experience inform funding opportunities and participate as full members on grant panels (e.g., the Canadian Cancer Society, CIHR-funded Strategy for Patient-Oriented Research competitions). However, I do not believe they have been quite the same as this particular funding opportunity.