Central Data Storage Needed to Assist Cancer Patients

The key to cancer care lies in numbers.

Data abounds about each person diagnosed with cancer: genetic information, test scores, treatment responses. With any math challenge, answers are most readily found when all the information is presented; a word problem can’t be worked out unless all the factors are included to give a full picture. Currently, the full picture of the fight against cancer isn’t being seen, meaning the potential for assistance for cancer patients is still out of reach.

That’s a reality some researchers are hoping to change. There’s been an increased push recently for streamlined data collection about cancer patients. Traditionally, the information has been siloed: Teaching hospitals, research centers, individual practitioners, nonprofit organizations and government agencies all amass and analyze their own data.

But that’s prompted some to question, what could happen if all of these thought leaders collaborated? Information-sharing has already been happening, with promising results. The federal Precision Medicine Initiative, which includes leadership from a number of organizers, is collecting genetic information from one million Americans. The goal of the projects is to provide researchers ample opportunity to identify patterns that could lead to breakthroughs in prevention and treatments of conditions like cancer. In the private sector, Multiple Myeloma Research Foundation and Flatiron Health are among the organizations inputting their data on the disease into the Genomic Data Commons, an information-sharing project to fuel research on multiple myeloma.

The value of such collaboration isn’t known by many, which has led to such efforts as Harvard Business School’s Kraft Precision Medicine Accelerator. The KPMA strives to raise awareness among medical circles and the general public about the need for information-sharing. While many hospitals and medical agencies are motivated to keep their research private — perhaps so they can continue to pursue individual grant money — supporters of collaboration argue that working together can produce the ultimate payoff for patients.

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