Capturing Patients’ Real-World Experiences to Improve Cancer Research and Care

A Q&A with Grace Castillo-Soyao, founder and CEO of Self Care Catalysts; grace@selfcarecatalysts.com

Q: You are well known as a visionary in the field of Real World Experience-Evidence (RWEE). As the founder and CEO of Self Care Catalysts, headquartered in Toronto, how do you see RWEE evolving to favorably impact the field of oncology?

A: I started Self Care Catalysts with some very basic questions. Why is the patient at the farthest end of the care line, treated as simply the recipient of care? It’s a very industrial mindset, a bit like an assembly line; the patient as something to be acted upon. But patients are often experts at their own conditions, including the many kinds of cancer. Why are they not invited to become participants in their own care, in contributing their own experiences? Why are patient experiences not considered to be scientifically valid?

As noted physician Sir William Osler famously said, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” Continue reading…


Apalutamide Maintains Health-Related QoL in Nonmetastatic CRPC

Excerpt:

“Treatment with apalutamide (Erleada) was not associated with a significant impact on health-related quality of life (HRQoL) in patients with high-risk nonmetastatic castration-resistant prostate cancer, according to patient-reported outcome (PRO) data from the phase III SPARTAN trial.

“In the study overall, patients treated with the addition of apalutamide to standard hormone therapy also had an improvement in metastasis-free survival (MFS) and longer time to symptomatic progression compared with those who were treated with placebo.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Patient-Reported Outcomes Could Transform Cancer Care

A Q&A with Jared Adams MD, PhD, Chief Science Officer at Self Care Catalysts; jared@selfcarecatalysts.com

Q: Patient-reported outcomes (PROs) are health care outcomes, such as symptoms or quality of life, reported directly by a patient. In recent years, PROs have emerged as a potentially powerful new way to understand cancer outcomes. Could PROs lead to the next breakthrough in our understanding of cancer?

A: When biochemist and Nobel Prize winner Kary Mullis spoke to my undergraduate class some 20 years ago about his invention of the PCR method for genetic amplification, he put it in historical context by mentioning that every major clinical advance has been preceded by a breakthrough in scientific investigative methods that allowed us to “see” in new ways. Dutch scientist Antonie Van Leeuwenhoek’s microscope allowed scientists to see cells for the first time, advancing us beyond the notion of cancer being caused by an abundance of black bile. The PCR method allowed us to see and manipulate cancer at the genetic level, leading us down the road to targeted therapies aimed at specific genetic mutations. Advances in computer hardware and modeling techniques have allowed us to map the genomes of cancers, moving us beyond a simplistic organ-based model of disease and setting up the possibility of new drug discoveries in silico. Observing and understanding how cancer cells interact with circulatory and immune systems led to VEGF inhibitors, PD-1/PD-L1 inhibitors, and the list goes on… Continue reading…