There’s a big problem with the U.S. health care system: a fundamental lack of trust between patients and the health care system, especially when it comes to the use and benefits of health data collection.
A number of medical leaders came together at a dinner conversation with Fortune to discuss this issue. Among those present: Arif Nathoo, co-founder and CEO of Komodo Health; Toby Cosgrove, health data evangelist and former chief of Cleveland Clinic; Greg Simon, president of the Biden Cancer Initiative; Ariana Huffington, CEO of the wellness group Thrive Global and co-chair of Fortune’s Brainstorm Health conference; and Kathy Guisti, a cancer patient and former pharmaceutical executive who founded the Multiple Myeloma Research Foundation (MMRF).
The trust deficit between patients and the medical sector, the current lack of return on investment for patients who give their data away, and the difficult work needed to fix these problems was a recurring theme at the dinner.
“Patients have never been at the center of the health care system,” Simon said. “You can add all the value you want, but they’re trustees, and they’ve lost that sense of trust.”
A lot of the problem, according to the attendees, revolves around a health ecosystem that collects sensitive patient data without providing much in return. Nathoo of Komodo Health put it this way: “One of the most horrible jokes in health care is that possession is 90% of the law—But where do we get the intervention?”
Cosgrove added that a major hurdle is the sheer volume of data being collected and the relative inability to turn this data into actionable insights and information. One-third of the data in the world is now health care data, he said, and much of it remains unstructured. “That’s the problem, but that’s also the opportunity,” he said. He believes technology like machine learning and natural language processing could help change that.
“Right now, the patients are not at the center,” Giusti said. “But the power is shifting.”
Read more about this wide-ranging dinner conversation here.