Topol Calls on Healthcare Industry to “Emancipate” Patient Data

Eric Topol Xconomy/Exome

Eric Topol has a long list of job titles. From a talk yesterday in San Diego, he might be aiming to add a new moniker, as “the great emancipator” of electronic medical records.

Already a professor of genomics, director of the Scripps Translational Science Institute, practicing cardiologist, and advocate for digital health innovation, Topol called for “the emancipation” of patient data at a conference yesterday sponsored by the healthtech-focused subsidiary of wireless technology giant Qualcomm (NASDAQ: [[ticker:QCOM]]).

“Patients have to own their own medical data,” Topol told over 100 healthtech industry leaders at the fourth annual Connect 2015 conference. Freeing patient data from the captivity of healthcare providers, insurers, and other entrenched industry interests, Topol explained, is a necessary prerequisite for “democratizing” healthcare.

Topol already is known for his trenchant views concerning the medical profession and the American healthcare industry. He contends that the rise of the Internet and new digital health technologies are helping to change an “ossified” healthcare industry and the “ingrained paternalism” of doctors.

Now he says a much-needed revolution in healthtech innovation is inevitable—once patients have control over their own health records.

“Where else do you pay for something, but you don’t have a product you paid for—and it happens to be precious information?” he asked.

Topol’s point is that the consumer Web is going to help bring about a revolution in healthcare, said Rick Valencia, a Qualcomm Senior Vice President and general manager of Qualcomm Life. Valencia has hosted the annual industry conference to encourage collaboration, and to help build out the ecosystem of technology companies, healthcare providers, and others.

“We believe that an open, interoperable system, and the free flow of data is the foundation needed to build this whole industry—this connected health industry,” Valencia said. “Qualcomm is committed to this space for the long haul. We’ve built the biggest system out there for connected health, and we plan to double down on that over time and make it even bigger and faster.”

Topol-The Patient Will See You NowAfter his talk, Topol told Xconomy he devoted a chapter to the reasons why patients should own their own health data in his book, The Patient Will See You Now, published last December.

“Now I’m emphasizing it,” Topol said. “We’re trying, basically, to build [the road] to get there—to ownership of data—and why it’s so important.”

For example, Topol said patient data should be stored in a “private cloud.” Under a private cloud model, the pool of Web servers is distinct and secure, and only accessible by a single organization, which provides greater control and privacy. “If you don’t have your own data in a private cloud, you’re just waiting to get hacked,” he said.

Laws also would have to be changed. State laws currently determine the ownership of patient data, and Topol said, “Only in New Hampshire do people own their own medical records.”

So is he calling for revising the laws that control medical records in the other 49 states?

“First of all, it should be a civil right,” Topol answered. “It can be done. If people demand it and we start to find a functional legislature. It can be done. It shouldn’t be a state matter. It should be a civil right. You should have your data. It’s your body. Why should it be owned by a doctor? We also could have co-ownership models too, you know.”

Topol said no one has pushed for personal ownership of patient data before, but the proliferation of wearable health and fitness devices is creating a pool of users who own their own health data. “It’s starting to become a wake up call,” Topol said. “This is the only way out.”

Enabling patients to own their own data, however, doesn’t mean they would be able to understand it. So who would interpret the data?

“That’s why we have machines,” Topol said.

For example, Topol said, “I use the electrocardiogram. You couldn’t read an electrocardiogram. But you could instantly get the interpretation that tells you it’s normal, or whatever it is…There’s an app for all this stuff. It’s all software. It can be [accessed] sometimes through the cloud. Sometimes it’s embedded right in the phone.”

As the monitoring and diagnosis of patients moves to machines, Topol said the physician’s role shifts to oversight and treatment. “The doctor is the oversight [who says], ‘I don’t agree with that algorithm or that data, or I do agree with that, and this is how we’ll treat you.'”

Author: Bruce V. Bigelow

In Memoriam: Our dear friend Bruce V. Bigelow passed away on June 29, 2018. He was the editor of Xconomy San Diego from 2008 to 2018. Read more about his life and work here. Bruce Bigelow joined Xconomy from the business desk of the San Diego Union-Tribune. He was a member of the team of reporters who were awarded the 2006 Pulitzer Prize in National Reporting for uncovering bribes paid to San Diego Republican Rep. Randy “Duke” Cunningham in exchange for special legislation earmarks. He also shared a 2006 award for enterprise reporting from the Society of Business Editors and Writers for “In Harm’s Way,” an article about the extraordinary casualty rate among employees working in Iraq for San Diego’s Titan Corp. He has written extensively about the 2002 corporate accounting scandal at software goliath Peregrine Systems. He also was a Gerald Loeb Award finalist and National Headline Award winner for “The Toymaker,” a 14-part chronicle of a San Diego start-up company. He takes special satisfaction, though, that the series was included in the library for nonfiction narrative journalism at the Nieman Foundation for Journalism at Harvard University. Bigelow graduated from U.C. Berkeley in 1977 with a degree in English Literature and from the Columbia University Graduate School of Journalism in 1979. Before joining the Union-Tribune in 1990, he worked for the Associated Press in Los Angeles and The Kansas City Times.