The Power and Promise of Data Driven Medicine

Big data has the potential to change the way diseases are treated, therapies are developed, and medicine is administered. At Intel’s “Reimagine the Datacenter” event last week, the story of Eric Dishman was told, and the impact that this rising big data paradigm had in his life and recovery.

Twenty-five years ago, Dishman was a college sophomore who after extensive diagnosis, was told that along with two other diseases, he had a rare form of kidney cancer. The prognosis was bleak and doctors expected Dishman to survive for two more years at most before the disease took him. They told him that there was little that they could do – in his condition, he had no hope of a kidney transplant. It was just a matter of time. Dishman was faced with getting his affairs in order in preparation for death.

Stung by this news, Dishman started his final preparations when he said that he was advised by another patient to “get thy data.” It turned out to be advice that would ultimately turn his life around.

“I didn’t know what she meant,” explained Dishman. “We went to the library and started doing research on the conditions and the prognosis they had given me. Pretty soon, I started to figure out that they didn’t know anything about me.”

Among other things, Dishman found out that people his age (19 at the time) didn’t get these rare forms of kidney diseases. Knowing he still had something wrong, Dishman became an active participant in his health and his data. “I managed from that point forward to be a data-driven, proactive patient, sort of carving out my own path to figure out how I was going to get back to health and wellness,” he explained.

Using the data at hand, Dishman created his own personal health system, as he explained in a recent article. “I actively pursued access to technologies, data and cutting-edge treatments that helped maximize my time with friends and family,” he explained, adding that his treatments were performed at home as much as possible, away from hospitals and outpatient centers which he considered dangerous for his compromised immune system.

For two decades, Dishman’s data driven approach to his care worked, and he managed to defy death, turning cancer into a chronic condition that he was able to treat. But time eventually caught up with him and his kidneys finally failed. “I knew that I was in trouble because the options for chemotherapy and the options for treatment once your kidneys have failed are quite limited.”

Dishman explained that his path fortunately crossed with someone who worked at a company who did genome sequencing, and who recommended it as a last ditch hope for the dying man. Four weeks of processing later, Dishman had his genome sequenced. After that, he says it took six months of back and forth between doctors on both coasts to make sense of the information and discover news that would be his saving grace.

“One day, all of my doctors came in and said, “we’ve misdiagnosed you for 25 years,” the now healthy Dishman recalls. He had been put on several chemotherapies, and radiation treatments, and any number of other treatments, and it turned out that they were wrong. “They didn’t have a way of discovering it until now.”

With five terabytes of his whole genome at his disposal, including all 6 billion letters of his DNA, the course of Dishman’s life was changed. They now knew that he was, in fact, healthy enough to receive a kidney transplant. With the data in hand, Dishman was able to get the kidney transplant he needed, and his doctors were able to tailor his treatments to his specific needs, putting him on the road that went from hopelessness to a full recovery.

Today, Dishman is the general manager of the health and strategy solutions inside Intel’s Datacenter and Connected Systems Group (DCSG), using his story and influence to raise awareness of the potential that big data has in personalizing healthcare. He shared that he had run six miles that morning – something he hadn’t done since before he was first diagnosed. Dishman says he knows the power of big data.

“I don’t even like the term big data, we ought to call it big discovery,” says the recovered poster boy for the advancement of big data in healthcare – a role that he’s embracing wholeheartedly.

Dishman explained that last month he joined Senator Ron Wyden (D-Ore.) along with industry experts at a Bipartisan Policy Center forum to “explore the promise, challenges and policies that are critical to encouraging innovation and improving health care through big data.”

The potential is already starting to be realized. Stories about big data’s power for innovation in healthcare are cropping up with more frequency as organizations realize the life-saving potential of big data. Last month, we discussed the applications of big data around diabetes that Fujitsu was undertaking through a voluntary program of 26,000 employees. But currently, programs like this are small scale or experimental.

Dishman notes that he’s one of 50,000 people in a world of over 6 billion that have had their genome sequenced. Significant hurdles exist in turning that number around, including cultural and legal issues, issues around costs, and that’s all without mentioning the technology constraints.

On the positive side, there are new initiatives for big data in healthcare popping up. A new data mining project in Oxford seeks to advance medicine by looking for new drug targets. And just recently, the National Institute of Health announced a four year, $100 million dollar plan to establish big data centers to help researchers store and use large medical data sets.

In the meantime, Companies are cropping up to attempt to solve some of these challenges. DNA service company, 23andMe offers a genotyping service which takes a sample of your genome to discover if you have over 240 different health conditions, or 40+ inherited conditions – all for $99. Already disruptions are being talked about in this arena, as companies such as Illumina, Life Technologies, Genia and Oxford Nanopore Technologies explore new technologies that take humanity one step closer to the commoditizing of genome sequencing.

In the meantime, the promise of big data in healthcare is clear, and examples like Dishman’s serve as a testament to the power of big data, and the hope for truly personalized medicine in the near future.

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