Cancer Moonshot Initiative Proposes National Cancer Data Sharing Network

A blue-ribbon panel of cancer research experts has called for the formation of a “national cancer data ecosystem” in order to help achieve President Obama’s Cancer Moonshot Initiative’s goal of achieving 10 years’ worth of cancer advancements within five years.

In a report released to the National Cancer Advisory Board, and accepted by National Cancer Institute Acting, panel members described the current cancer research landscape and offered recommendations for making transformative changes happen.

“The recommendations in this report represent the merger of science, technology, advocacy, social science, and big data coming together to solve cancer’s greatest challenges,” write the report’s authors.

One of the panel’s criticisms of the current cancer research environment is that too much data—from patients’ own self-reported data, to tumor databases, clinical research reports, and genomic data—are stashed away in silos, inaccessible to those who need the information for research purposes. Much of the information is also stored in hospital and patient electronic health records (EHRs) where lack of interoperability means the data in the EHRs can’t be readily shared and exchanged.

“The enormous volume of data being generated by cancer researchers, clinicians and patients today requires a national infrastructure to share, combine and analyze those data in an easy-to-access format. The National Cancer Data Ecosystem will allow both public and private information resources to be readily accessed, discovered and connected through the use of a common information architecture,” the authors wrote.

They also acknowledged that cancer patients are all too familiar with the difficulties of obtaining even their own information from their physicians and EHRs, and getting different physicians to integrate their other records into their care plans.

The authors assert that a “national cancer information infrastructure will connect currently siloed data sources and serve as the foundation for developing powerful new integrative analyses, visualization methods, and portals that will not only enable new insights into cancer initiation, progression, and metastasis, but also inform new cancer treatments and help initiate new clinical trials.”

Click here to read the panel’s full findings.

1 Comment

  1. I am looking for my fathers medical records he died awhile back. His name is Larry or Larsen Shore lived in San Francisco ca.

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