The importance of data is beyond doubt, especially in medicine and healthcare. Yet, we seldom hear from patients their thoughts on the power of big data. Recently, Brad Power, a follicular lymphoma survivor (i.e., a slow growing cancer which targets one’s white blood cells) wrote in the World Economic Forum to share his views.

Although Power has gotten rid of his disease, there’s still a high chance of recurrence. As such, he keeps himself informed of the latest treatment options including different kinds of chemotherapy drug and immunotherapies such as CAR T-cell (i.e., changing the characteristics of T-cells in the lab to target cancer cells) and bispecifics (i.e., an artificial protein which triggers the binding of two antigens to ignite immune responses).

Data-sharing was almost non-existent for personalized cancer treatment

Some of these methods are still at experimental stage. They do not guarantee success and patients are often exposed to adverse side effects. However, what surprised Power was institutions do not practice sharing of treatment data and results with other institutions, especially for personalized cancer treatment.

Power came to know of this after he attended a medical conference before the COVID-19 pandemic and spoke with some of its presenters. Power understands that institutions offering personalized cancer treatment are also establishing related data sharing standards at the moment, but he is concerned if the absent of data-sharing is preventing learning and progress from taking place.

More importantly, patients are not able to learn from other patients who have either benefited or failed from such personalized treatment. “I want to know which decisions worked out well, and which did not, so I can determine what would be best for me,” Power wrote.

Power believes individual medical board and physicians understand why they will recommend personalized treatment option to patients but they do not have much insight why other medical boards or physicians are also making similar choices. In short, there is a lack of consistency on when and why personalized cancer treatment is performed.

A call for a global learning system

Power calls for a global learning system, one that will detail treatment decisions and associated outcomes. He feels that electronic health records and insurance system are not designed for patients to learn more about one’s decision on cancer treatment, their responses to the chosen treatment option and their disease-free or progression free survival rates.

He cited a model proposed by Cancer Commons, a non-profit organization which assists cancer patients in accessing and identifying best possible treatments. The global learning system will search and sort for relevant data and generate appropriate advice from there. The system will discuss the rationale behind each chosen treatment and why patients may or may not benefit from the regime. It will act as a “second opinion” from a cancer specialist.

Power encouraged a synergy between researchers, healthcare providers and patients in this global data-sharing effort, especially when it comes to testing the emerging data-sharing standards. “These focused experiments must capture the logic behind treatment decisions, monitor the progress of individual patients and enable sharing of real-world evidence globally for continuous learning,” Power added.


Author Bio

Hazel Tang A science writer with data background and an interest in the current affair, culture, and arts; a no-med from an (almost) all-med family. Follow on Twitter.