Each year, the United States spends billions of dollars on cancer research. In fact, the National Cancer Institute’s budget is $5.665 billion for 2018, and that does not include money from private donations. Despite all the money and effort spent on cancer research, there is a bit of a “big data crisis” preventing healthcare institutions from optimally learning from each other.
The New York Times recently published an article titled, “New Cancer Treatments Lie Hidden Under Mountains of Paperwork,” which talked about this problem and the difficulty of extracting meaningful data from medical records. And I have to admit, the article struck a nerve.
Lack of sharing = fewer insights
The problem is that too much cancer data is trapped in medical records that stay within a hospital. This means that cancer researchers can’t easily tap into the mountains of data being produced at other institutions. It’s the combination of research data that will provide true insights. The author of the Times article, Gina Kolata, writes:
In the United States, there is no single format used by all providers, and hospitals have no incentive to make it easy to transfer records from one place to another. The medical records mess is hobbling research and impeding attempts to improve patient care.
This sentiment also appears in a 2016 Wired magazine article, titled, “The Cure for Cancer is Data – Mountains of Data.” Author Lola Dupre interviewed Eric Schadt, who started the Icahn Institute for Genomics and Multiscale Biology at Mount Sinai Hospital in New York. Schadt discussed how, despite a plethora of research data, it’s difficult to piece together the information for true advancements. Schadt says:
“In the five years that I’ve been here, I’ve realized that’s just not going to happen within the medical centers. They’re too isolated from each other, too competitive, and they’re not woven together into a coherent framework that enables the kind of advancements we’re seeing in nearly all other industries.”
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