Health IT Pulse

Sep 30 2016   1:03PM GMT

Cancer research panel calls for National Cancer Data Ecosystem

Tayla Holman Tayla Holman Profile: Tayla Holman

Data sharing

The Cancer Moonshot’s Blue Ribbon Panel has called for a national infrastructure that will allow researchers, clinicians and patients to collaborate in sharing their data and knowledge about cancer.

The panel proposes developing a National Cancer Data Ecosystem that enables cancer research participants and care communities — such as patients and their families — to contribute, access, combine and analyze various cancer-related data sets.

According to Gad Getz, Ph.D, director of the Cancer Genome Computational Analysis Group at the Broad Institute of MIT and Harvard and co-chair of the Blue Ribbon Panel’s enhanced data sharing working group, cancer research has slowed down because much of the data exists in separate databases. Connecting the data in a national data sharing ecosystem would allow research to move faster, Getz said.

The panel argues that the lack of a coordinated effort to assemble cancer data in a readily accessible fashion and the inability to process the data in an interoperative manner prevents the data from being fully leveraged. Also, there is no national infrastructure to which cancer patients contribute their data, and it can be hard for patients to access their own information or transfer records from one provider to another.

The Blue Ribbon Panel goes on to say that there have been localized attempts to achieve a national cancer data ecosystem, but coordination is needed at a national level to address the challenges of connecting the disparate efforts.

A National Cancer Data Ecosystem could improve the quality of care for cancer patients and provide patients with more knowledge and options about their treatments, while also allowing them to contribute their own data and insights. The ecosystem would also improve the efficiency and speed of cancer research.

President Obama announced the establishment of the Cancer Moonshot during his final State of the Union Address on January 12, 2016. The goal of the initiative, led by Vice President Joe Biden, is to accelerate cancer research and make more therapies available to more patients.

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