5 Health Leaders on the Trust Deficit in U.S. Medicine

December 4, 2019, 8:51 PM UTC

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In a world of wearable trackers, at-home DNA testing kits, and pioneering advances in gene therapy, it can be tempting to fall into digital delirium.

But there’s one big problem: A fundamental lack of trust between patients and the U.S. health care system, especially when it comes to the use (and ultimate benefits) of health data collection, said multiple medical leaders during a wide-ranging dinner conversation with Fortune on Tuesday.

Attendees included Greg Simon, president of former Vice President Joe Biden’s eponymous Biden Cancer Initiative (which suspended operations earlier this year in the midst of the 2020 presidential campaign); Arianna Huffington, CEO of the wellness group Thrive Global and co-chair of Fortune‘s Brainstorm Health conference; Kathy Giusti, a cancer patient and former pharmaceutical executive who founded the Multiple Myeloma Research Foundation (MMRF); Toby Cosgrove, the former chief of the renowned Cleveland Clinic and ardent digital health evangelist; Arif Nathoo, co-founder and CEO of Komodo Health, which is using AI and data analytics to build comprehensive maps of patients’ health journeys; and a slew of other leaders across the medical and digital health space.

You might think that such a collection of stakeholders would be unabashedly positive about the state of the industry. But a recurring theme was the trust deficit between patients and the medical sector, the current lack of return on investment for patients who fork over their data—and the difficult work required to fix it.

“Patients have never been at the center of the health care system,” Simon said bluntly. “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 Simon and others at the discussion, has to do with a health ecosystem that amasses sensitive patient data without providing much in return to the people providing it. (As Nathoo elegantly put it, “One of the most horrible jokes in health care is that possession is 90% of the law—But where do we get the intervention?”)

“Developers need to start developing technology that isn’t capable of hoarding this data. All the data we’re getting from patients is a mile away from the actual patients. Until we actually talk to these people, the proxies mean very little,” said Simon.

Huffington agreed on that lack of personal connection, which can breed mistrust and cynicism. “You need to find people where they are,” she said. “Where you work, what your life is like, even what brands you’re using.”

A major hurdle, said Cosgrove, is the sheer volume of data that’s being produced and the relative inability to turn “data” into actionable insights and information. He pointed out that “one-third of the data in the world is now health care data,” and much of it remains unstructured. “That’s the problem, but that’s also the opportunity,” he said, noting that technology such as machine learning, voice recognition, and natural language processing could help change the dynamic.

And, sometimes, it helps to go deep—and it really helps to share. Giusti’s organization, MMRF, is centered on the idea that collecting a massive dataset and then actually sharing it with other stakeholders is key to developing new treatments that benefit patients (and, consequently, a way to gain their trust). MMRF doesn’t exactly have a bad track record on that front; it’s helped fuel an explosion of new, effective therapies for multiple myeloma patients over the past decade using this philosophy.

“Right now, the patients are not at the center,” said Giusti. “But the power is shifting.”

Read on for the day’s news.

Sy Mukherjee


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