Collecting the data needed to move precision medicine forward

Cancer patients across Canada, particularly those with advanced cancers, are in urgent need of access to treatments with a demonstrated ability to improve quality and length of life. At the same time, decision makers are tasked with allocating limited financial resources to novel therapeutics with uncertain clinical and health system value.

For patients to have access to the best prevention, diagnostic and treatment strategies, decision makers therefore need to be able to weigh the risks and benefits associated with different approaches. This process requires carefully curated, high-quality data.

This is especially the case in precision oncology, a novel approach to cancer care that tailors treatments to the unique characteristics of a patient’s tumour characteristics. While this approach has been found to provide more effective treatments in select patients, economic and clinical evidence on a population level remains uncertain due to limited data available to evaluate efficacy and cost-effectiveness.

In a study published in the journal Value in Health in 2022, a team of health researchers that includes Marathon of Hope Cancer Centres Network (MOHCCN) members proposed a set of 68 core data elements required to help address this issue.

“Our core dataset outlines the data needed to provide this evidence,” says lead author Dr. Samantha Pollard, now a Research and Implementation Scientist for Fraser Health, Adjunct Professor at Simon Fraser University, and a member of the Network’s Health Technology Assessment (HTA) working group. “Combined with real-world evidence generation, it will reduce uncertainty related to precision oncology outcomes to help ensure that patients have access to the best available treatments.”

These core data elements – which include demographic characteristics (e.g. age, sex, geographic location), clinical elements (e.g. cancer diagnosis, treatment response), genomic elements (e.g. actionable sequencing findings) and resource utilization information (e.g. cost of hospitalizations, lab tests, and treatments) – were identified through a method called a modified Delphi process, explains Dr. Dean Regier, Senior Scientist within Cancer Control Research at BC Cancer and senior author on the study, who also leads the HTA working group.

“We worked with an international team of economists, oncologists, epidemiologists, researchers, and decision-makers to identify data elements that are necessary to make these decisions and better align patients to the healthcare interventions most likely to improve their health and wellbeing,” he says.

Data elements related to patient outcomes also include patient-reported outcome measures, such as quality of life considerations. This is important to ensure that risk-benefit evidence evaluations consider the potential for a new drug to improve patients’ quality of life even if it does not address clinical outcomes, such as overall survival, compared to standard treatments.

Through the publication of this dataset, the authors hope to spur enhanced data standardization and also recommend improvements in data collection capacity and infrastructure. Dr. Pollard presses the importance of these improvements to data collection, emphasizing that “doing so will allow decision makers to more confidently allocate resources toward innovations with both promising and demonstrated benefit to patients and health systems.”

This work was led by the Canadian Network for Learning Healthcare Systems and Cost Effective ‘Omics Innovation (CLEO), with support from the MOHCCN. In addition to funding, the MOHCCN is also bringing together a multidisciplinary network of leading scientists to advance precision oncology for patients across Canada.

“CLEO and the MOHCCN are collectively aligned with an overarching goal to apply best-in-class research and evaluation methods,” says Dr. Pollard. “These initiatives are positioning Canada to ensure that precision oncology can deliver on its promise of providing world-class cancer care for all Canadians.” 


Defining a Core Data Set for the Economic Evaluation of Precision Oncology


Samantha Pollard, Deirdre Weymann, Brandon Chan, Morgan Ehman, Sarah Wordsworth, James Buchanan, Timothy P. Hanna, Cheryl Ho, Howard J. Lim, Paula K. Lorgelly, Adam J.N. Raymakers, Christopher McCabe, Dean A. Regier


This study was partly funded by a Marathon of Hope Cancer Centres Network Special Initiative grants to Dr. Dean Regier.

“Our core dataset outlines the data needed to provide this evidence. Combined with real-world evidence generation, it will reduce uncertainty related to precision oncology outcomes.”