Is precision medicine the future of cancer treatment for Canadians? To answer that, we need to understand its patient- and system-level impacts

By Samantha Pollard*

Precision oncology uses genomic sequencing technologies to guide cancer care. In recent years, this promising framework has gained widespread support by demonstrating improved outcomes for select patients. However, precision oncology is in its early stages, and is not available to all patients with cancer. To broaden patient access to precision oncology, more evidence is needed to help decision makers determine what sequencing and treatment strategies should be made widely available.

Precision oncology is costly, both in terms of the sequencing and interpretation process used to understand the genetic makeup of an individual’s cancer, as well as the treatments developed to target specific tumour characteristics. Across publicly funded health systems, allocation of limited financial resources toward new and costly precision oncology innovations can impose further constraints on our already strained healthcare systems. In Canada, we simply do not have the resources to fund each and every promising health intervention. So, to assist decision makers in their endeavour to allocate resources toward health technologies and services that balance both patient and system impact, evidence that informs these decisions needs to be high quality, valid, and reliable.

Within precision oncology, establishing such evidence is a challenge. While collectively common, cancers are individually rare. This means that large-scale studies are difficult to conduct because few patients share similar cancer characteristics. It is therefore difficult to, for example, generate enough data to determine if these new testing and targeted treatment strategies are effective in improving patient health and wellbeing, compared to existing therapies. To be able to answer these types of questions, faster and more comprehensive access to valuable clinical, genomic and health systems data will serve as a first step in reducing this uncertainty.  

In Canada, collecting and sharing data needed to answer questions related to patient and health system impact is challenging. Unfortunately, data needed to effectively evaluate precision oncology – including its impact on patient health, quality of life and its cost-effectiveness – are not always collected. Data collection across institutions is not done in a consistent manner and is often incomplete. The data that do exist are siloed within jurisdictions, making access and data linkage challenging. Rethinking how these data are collected and made available to researchers is imperative to meet the promise and demands of precision medicine.

In addition to understanding the value of precision medicine in terms of cost and clinical outcomes (e.g. tumour response or survival), decision makers also need to consider whether and how patients value these new technologies and treatments. Without this information, the evidence that informs reimbursement, implementation, and uptake decisions is incomplete. After all, patients and their families are those who are ultimately impacted by such decisions.

When it comes to medicine, the concept of ‘value’ is broad. What certain perspectives value within a health system may differ dramatically, yet the consequences of discounting the values of those who are asked to participate in research, allow their data to be used, and consent to treatment is highly problematic. For example, a reduction in tumour size following treatment can be considered clinically meaningful but may not be of value to patients unless it is accompanied by reduced symptoms, improved quality of life, or improved survival. Understanding patient values is critical to determining how research should be conducted, what outcomes are meaningful, and how to engender trust in the innovation process.

As a Research and Implementation Scientist with Fraser Health, Adjunct Professor at Simon Fraser University, and co-investigator of the Canadian Network for Learning Healthcare Systems and Cost-Effective ‘Omics Innovation (CLEO), it’s these questions and challenges that guide my research. I use both qualitative and quantitative methods to evaluate precision oncology from different perspectives, including those of patients, clinicians, and the public. I work to better understand what patients want, what they expect, what their concerns are, and how to design research and data access and infrastructure frameworks that respond to those concerns.  

Pan-Canadian initiatives like the Marathon of Hope Cancer Centres Network (MOHCCN) and CLEO, (which is co-funded by the MOHCCN) are promoting the data- and evidence-informed evaluation and implementation of precision medicine across Canada. Collectively, these pan-Canadian initiatives are bringing together multidisciplinary groups of researchers, clinicians, patients, and patient advocates to improve the quality of the research being done, ensure that it is guided by patient and public values and maximize its impact. These large network-based initiatives are also helping to break down data silos across Canada and provide researchers with access to much-needed patient-level data, in a manner that directly responds to patient values and concerns. This is why creating the MOHCCN’s Gold Cohort, which combines genomic and clinical data from patients across the country and which will be made available to researchers in the Network and beyond, will have a meaningful impact on accelerating precision oncology across Canada.

As a member of the MOHCCN’s Health Technology Assessment Working Group, I am fortunate to work with members of the Network's Patient Working Group to understand barriers to precision oncology, research participation, and uptake, from the perspectives of individuals with lived and living experience of cancer. These ongoing efforts are building on CLEO research methods and outputs, highlighting the value of linking initiatives and promoting multidisciplinary collaboration.

I believe that multidisciplinary science that engages a breadth of perspectives across health systems is not only beneficial, but necessary. As researchers, we cannot determine what patients need, perceive, or prefer, without engaging them directly throughout the research and innovation trajectory. Similarly, evidence- and values-informed reimbursement and implementation of health technologies is not possible without data to accurately estimate clinical effectiveness, cost effectiveness, and patient preferences. Initiatives such as the MOHCCN and CLEO provide us with the opportunity to redefine how precision medicine research and implementation are done. By bringing together multidisciplinary experts, including those with lived and living experience, and creating robust data resources, these networks will help ensure that precision oncology is apt to deliver on its promise of timely access to effective cancer treatment.

*Samantha Pollard, PhD, is a Research and Implementation Scientist at Fraser Health, an Adjunct Professor at Simon Fraser University and a co-investigator in the Canadian Network for Learning Healthcare Systems and Cost-Effective ‘Omics Innovation (CLEO). She is also a member of the Marathon of Hope Cancer Centers Network’s Health Technology Assessment Working Group