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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.
Using digital health to combat mental health care stigma. There's a mental health stigma problem in Thailand, the country with the highest suicide rate in Southeast Asia last year—and one company is trying to leverage digital health to fix it. Ooca, co-founded by Kanpassorn Suriyasangpetch, has created an online mental health counseling platform with the hopes that such technology can attract patients who need help but are skittish about the societal stigma (or just plain don't have access to psychiatric services in rural communities). (Fortune)
People really didn't like that weird Peloton ad. Peloton is taking a bit of online bashing for an ad that is... well, I'll let you judge for yourself. The holiday ad has been criticized by some for being potentially sexist (it involves a husband gifting his wife one of the high-tech, digitally-connected exercise bikes for Christmas, and said wife's ensuing video log of her exercise routine over the next year) and by many more for just being weird. Peloton stock is down nearly 4% over the past day, but this could very well just be a blip; holiday advertisements probably won't stick in people's minds for long, and Peloton has a pretty dedicated customer base. Since its IPO in late September, the company's shares are up nearly 28% despite the recent fall. A lot is going to depend on sales over this holiday season. (Fortune)
Biogen's moment of truth. There's a big moment coming up for Biogen on Thursday with the company slated to release more data about its experimental Alzheimer's treatment aducanumab, which Biogen unexpectedly brought back from the dead in late October after initially abandoning hopes back in March. There's been plenty of skepticism surrounding that reversal and questions about just how Biogen's new analysis of its clinical dataset changes things. On Thursday, the company will be presenting many more details at an Alzheimer's meeting in San Diego. It could prove a critical moment for the treatment and the future of Alzheimer's drug development. (Bloomberg)
Roche cancer immunotherapy cocktail gets an FDA nod. Roche's cancer immunotherapy treatment Tecentriq has won another Food and Drug Administration (FDA) green light, this time for certain patients with advanced lung cancer. The approval was granted based on data showing that a cocktail of Tecentriq and chemotherapy extended this subset of patients' lives by nearly five months compared with chemotherapy alone. That may not seem like much, but given just how deadly lung cancer is, the added indication shouldn't be surprising. (PharmaTimes)
THE BIG PICTURE
WHO: Climate change's health effects lack funding efforts. The World Health Organization (WHO) says that climate change is exacerbating global health crises such as heat stress, the medical effects of extreme weather events, and a surge in infectious diseases carried by mosquitoes. Unfortunately, the agency said on Tuesday, the focus on the health-related effects of climate change is tiny relative to the risks, with just 1% of global financing for climate efforts funneled toward health efforts. (Reuters)
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