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Applying real-world evidence from everyday patient care to improve health outcomes and drive discovery

BC Cancer researchers are at the forefront of developing a learning health care framework that would collect data from every day patient care to help decision-makers make better informed decisions about treatment options for patients
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​BC Cancer researchers are developing a framework to help decision-makers better understand which cancer treatments should be offered to patients, especially in cases of rare cancers. Using an approach that is based on data collected in every day patient care, researchers are hoping to create better evidence and remove any uncertainty around drug efficacy to expedite access to new therapies. 

“Evidence for precision oncology – which uses a patient’s DNA to select their best treatment option – can be difficult to generate,” says Dr. Dean Regier, senior scientist at BC Cancer and associate professor, UBC. “The evidence we are able to generate can be low quality because randomized controlled studies are not always possible to conduct. As researchers and clinicians, we only see the outcomes of treated patients and don’t always know how well new treatments work compared to existing treatments.” 

Knowing how well precision oncology treatments work will help decision makers at programs like BC Cancer decide whether to provide those treatments to future patients, especially in cases of rare cancers when it’s not possible to enroll enough patients in a clinical trial to understand drug safety and effectiveness. The framework would help BC Cancer make more informed decisions about clinical care while also prioritizing patient access to treatment.

“Our goal is to achieve timely patient access to precision oncology that improves population health and our understanding of value,” says Dr. Regier. “In time we hope that health care systems like BC Cancer could use our framework to enter into agreements with pharmaceutical companies to provide free or discounted access to new or off label treatments for a limited time. During this time, BC Cancer would monitor how well patients are responding to new treatments.”

The new framework is based on the concept of learning health care, where health care systems collect data, create evidence, and use that evidence to inform treatment decisions. Oncologists would be able to provide patients with new precision oncology treatments and monitor how well the treatments work in the real world. Learning health care would allow decision-makers to better understand whether to continue collecting evidence, to fund the new treatment, or to stop collecting evidence.

Recently published in npj Precision Oncology, the framework provides a roadmap for achieving learning health care for precision medicine. To make this framework fit-for-purpose, next steps of this work include engagement with stakeholders in the health care system, including patients, the pharmaceutical industry, and Canadian regulatory and reimbursement agencies. 

As part of this engagement, BC Cancer researchers are working with the Canadian Personalized Healthcare Innovation Network and Roche Canada to shape new sustainable reimbursement pathways for personalized cancer treatments. Read more about this work on the BC Cancer Research Institute website

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