TEDMED speakers propose some innovative new uses for big data

Big data offers big promise for the future of medicine, and at the annual TEDMED conference Tuesday in the nation's capital, speakers put forth ideas that included the use "digital traces" and "digital bread crumbs" as ways to help guage a patient's health.

TEDMED, as described by its leaders, is “a multi-disciplinary community of innovators and leaders who share a common determination to create a better future in health and medicine.” This year’s sold-out conference, held at The Kennedy Center for the Performing Arts in Washington, DC, April 16-19 is hosted 1,800 attendees, and 100,000 Web participants at 2,700 host locations across 79 countries on upgraded simulcast systems.

In the session, “How Can Big Data Become Real Wisdom?,” Deborah Estrin, professor of computer science at the new Cornell Tech campus in New York City and co-founder of the nonprofit startup, Open mHealth, talked about how the use of “digital traces,” or “digital bread crumbs,” could help show signs of change in a person’s health and well-being, a sort of “digital social pulse.”

Information about a person's individual use of electronics is already being collected by service providers for marketing purposes. “If the data is there, why aren’t we using it?” Estrin asked. This data could provide indications of a decline in social or physical activity, something that is currently judged on a subjective basis. The data, which could reveal nuances in behavior, could be particularly useful in monitoring chronic diseases, such as depression or heart disease.

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Elizabeth Marincola, chairman of the board of eLife, a researcher-led digital publication, urged the establishment of open scientific journals. For the past 350 years, publication has been the “coin” of the realm of science. To grow a career, a scientist or physician, must publish. Prior to the ability to publish electronically, publishing was expensive, Marincola said. Those days are gone now, and things should change, she said. 

“Science, money and the public’s right to know have been colliding for the past 20 years,” Marincola said. “The information technology revolution has just poured fuel on the fire.” 

Marincola said, "I believe free flow of science goes to the heart of our lives. Health and medicine are too important for a tiered approach to knowledge. Science is about accumulating knowledge and building on what’s gone before. The only limitations should be our own minds."

Amy Abernathy, MD, associate professor in Duke University Schools of Medicine and Nursing, director of the Duke Center for Learning Health Care (CLHC) in the Duke Clinical Research Institute, and Director of the Duke Cancer Care Research Program (DCCRP) in the Duke Cancer Institute, proposed a new way to share health information, through donation. “Personalized medicine is within our grasp,” she said. “But, we need more big data.”

Abernathy offered a solution; patients could voluntarily donate their cancer tissue and health information, in the same way that people donate to blood banks, for the good of society. According to the patient’s desire, the information could be used for research for the patient and their family, alone, or for the greater good. Unlike blood donations, healthcare data doesn’t deplete, it only expands as it is used, she said.

Follow the TEDMED conference on Twitter @TEDMED, #TEDMED.

[See also: TEDMED 2013 Announces First 10 Speakers and Launches Two New Initiatives to Drive Innovation and Collaboration.]