Shaping the Future of Cancer Care: The Value of Managing Aggregated Data From Patients’ Online Communities

By Daniel Vorobiof, MD, and Irad Deutsch, July 10, 2022

In 2021, more than 1.9 million people in the United States were estimated to be diagnosed with cancer, and that number continues to increase yearly. Medical research is critical in prolonging survival and improving the quantity and quality of life of patients. Cancer research is one of the most heavily invested areas, with more than $5 billion spent annually in the United States on exploring and developing new therapeutic options.

A significant element of cancer research relies on accurate available patient data, but most of it is limited in quantity and scope. This information is currently obtained from electronic medical records, pharmaceutical laboratories, and clinical trials, limiting analyses to smaller cohorts of patients, significantly affecting the obtained end results. These types of controlled environments can produce synthetic outcomes and data that may not always be reflective of real-life situations.

An important consideration is that most research in cancer care focuses on the disease, rather than the individual patients themselves. When the primary goal is to shrink tumors and kill cancer cells, research and collected data tend to favor the view of clinicians, and valuable insights provided by patients may be missed. For data to be more beneficial, they must not be limited solely to patients’ clinical response and toxicity experiences but should also take into consideration all facets of a patient’s life—including demographics; financial status; as well as social, psychological, emotional, and logistical factors.

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