The Value of Hidden Patterns that Patients are Sharing

February 4, 2022

In recognition of World Cancer Day, Daniel Vorobiof, MD, touched on the use of Belong.life, a patient-centric social and professional network, in collecting real-world data and providing patients with additional resources, and highlighted several real-world data studies that were conducted with the application’s data.

Belong.life is a patient-centered social and professional network that not only provides patients with resources to better understand and manage their disease, but collects real-world data on topics ranging from financial toxicity to clinical trial participation, according to Daniel Vorobiof, MD.

Vorobiof was a co-author on 4 studies examining real-world data collected from patients who used the application, with topics including how financial toxicity for patients receiving immunotherapy may be treated like any other adverse effect (AE),1 the management of sexuality-related parameters in women with early breast cancer,2 low enrollment rates on clinical cancer trials,3 and COVID-19 vaccination for patients with cancer during the early days of the pandemic.4

Vorobiof stated, “We look at things that are subjective. They’re not written by doctors in their medical records. We look at what the patient is saying and what the patient is feeling in an anonymous way, and they are free to speak about it. Real-world data didn’t emerge today or yesterday. There have been many clinical trials that were successful in a small number of patients, but when the same drug and same dose was given to patients who were not on a clinical trial once the drug was FDA approved and available commercially, the results were not the same; the [AEs] were bad, and the doses needed to be adjusted. That is the real-world experience.

“What we want to bring [to light] is all these hidden patterns and factors that the patients are sharing with us. They are very important for making any clinical trial a success but may not be looked at the same way that other parameters are being examined.”

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