Data holds great promise for healthcare – in finding new cures, empowering patients and improving healthcare delivery systems.
Jay Walker, chairman and curator of TEDMED, calls Big Data a new “super power” that will allow people to recognize patterns in data that are completely obscure today.
“It will let us reshape how we do medicine and how we think about health,” Walker said in kicking off Wednesday’s session of the annual gathering of medical and healthcare thought leaders in Washington, D.C.
But while data is everywhere in the healthcare system, the effort to collect, filter and make sense of it is still in the early stages. Several prominent and emerging thinkers in the field of science and medicine shared their unique views on how to turn so-called data into “real wisdom.”
Astrophysicist turned computer scientist Larry Smarr is an example of a patient that has seen the value of analyzing large quantities of data – his own.
The founding director of the California Institute for Telecommunications and Information Technology has been collecting and tracking data on his own microbes for years to determine the cause of chronic inflammation in his colon. Through the process, he discovered that he has inflammatory bowel disease.
Smarr also realized the power of the “quantified self,” becoming an early adopter of the movement to quantify your own body.
“We’re going to be able to participate ourselves in a way that – because of the Big Data, and because of the ability to analyze it – we’ve got hope,” he said.
While he has access to supercomputers, Smarr sees a groundswell of private-sector initiatives developing technologies to allow people to track and quantify their health.
“All kinds of startups are coming in to make keeping track of the microbiome very simple,” he said.Getting access to your own data isn’t always easy, especially if the information isn’t collected by doctors, but by technology service providers. Deborah Estrin, a computer science professor at the new Cornell Tech campus in New York City, says people should be able to tap into and analyze information collected by mobile carriers, search engines and social networks.
“You’re continuously generating digital breadcrumbs with the services we interact with,” said Estrin. “Those breadcrumbs molded together form our digital trace.”
This “small data” could help people monitor their own health by tracking subtle shifts in movement or activities, she said.
”We need to liberate our data back to us, the user, for our digital services,” said Estrin, who is also co-founder of nonprofit startup Open mHealth.
While acknowledging the challenges of protecting privacy, a concern of some service providers, she believes the fast-growing app market for smartphones demonstrates that there is a precedent and even an incentive system for developing such a market.
Estrin’s team at Cornell is building prototypes to demonstrate the power of small data, and has set up a site where people can urge their service providers to package their small data.
Despite the abundance of data, patients have very little control over how it is used. Dr. Amy Abernethy, a palliative care oncologist and former NASA programmer who is driving new approaches to utilizing Big Data as director of the Duke Center for Learning Health Care, is seeking to empower people with their information.
Sharing the story of a colleague and cancer patient who wanted to share and access her healthcare information but couldn’t once a clinical trial was shut down, Abernethy said what is needed is an information donation system that keeps people in control over how their data is shared.
“We need to give our data a second life,” she said, pointing out that unlike blood or money, data actually becomes more valuable the more it is used over time.
A lot of work would have to into such a system to, both from the perspective of technology and trust, but Abernethy said TEDMED is a good place to start a conversation.
Photo of Deborah Estrin courtesy of TEDMED