Our digital and social media producer Rachel Rohr is back from a month-long trip cross-country, talking with young Americans.
Psychologist Sandor Gardos had seen 80 experts, including Nobel prize winners, but none were able to diagnose his serious medical condition — much less offer any effective treatment.
That’s when a friend told him about a new firm, MetaMed, which specializes in a different kind of second opinion. It offers personalized research for a price to people with difficult medical conditions.
The company gathers personal information and puts it to a team of not just doctors, but also researchers and information scientists, who take the information and analyze the data to come up with recommendations unique to each patient.
It’s sort of a directed crowd sourcing, and it’s not cheap — average cost is between $3,000 and 5,000 — though in one case, the bill ran to $250,000.
But Gardos told Here & Now it’s the only thing that has helped him. Gardos is still struggling with his illness, but he now has a working diagnosis and treatment.
The magazine Venture Beat calls it personalized health care for the 1 percent.
But MetaMed’s Sarah Constantin says the company is pioneering a new method in medicine that its founders hope will eventually help millions of people.
New York Magazine “Last year, with $500,000 from PayPal co-founder Peter Thiel, [Jaan Tallinn] helped launch a company called MetaMed, which, for fees ranging from $5,000 to (so far) $250,000, offers wealthy clients all the medical intelligence the smartest scientists and doctors can conjure.”
Bloomberg Businessweek “Researchers drawn from Google and top universities compare the patient’s case with the latest scientific studies, medical journals, and health data, seek out the procedures and hospitals that offer them the best chance at recovery, and give patients a wider look at their treatment options than a physician might provide.”
Wall Street Journal: “Since Skype was sold for $2.6 billion in 2005, making him tens of millions of dollars, [Jaan Tallinn] has moved on to bigger issues—like extending the span of a healthy human life and saving the species. And those are just this spring’s initiatives.”
ROBIN YOUNG, HOST:
It's HERE AND NOW. Get a second opinion. We've all heard that when it comes to diagnosing and treating serious medical conditions. Now, a new startup is giving a second opinion that's an aggregate of many, provided by a team of not just doctors but researchers and information scientists who take in a patient's information and then analyze data to come up with recommendations. It's not cheap. It can run from a few thousand to hundreds of thousands of dollars.
The magazine VentureBeat calls it personalized health care for the 1 percent, but MetaMed's founders argue, well, they argue what? Let's find out. In a moment, a happy client. But first, we start with Sarah Constantin. She heads up research and analysis for MetaMed. She's working on her doctorate in math at Yale University. And, Sarah, what is the argument of the company? What do you hope to provide?
SARAH CONSTANTIN: Well, we generally work with patients who have gone to a lot of doctors and not been able to find anything that can help them. They get conflicting information. The average doctor's visit in America only lasts 11 minutes. They don't get enough personalized attention. So what we do is we collect their medical records, give that to a team of scientists and doctors to actually see for the patient, for their personal background and demographics and genes and symptoms, what kinds of medical treatments actually show evidence of effectiveness and what's been debunked, what's actually not very good. We have the time and the resource and the expertise to go through that information in more detail than you're likely to get through any kind of conventional system.
YOUNG: Well, one presumes that if you have a serious illness that your doctor is taking your information and then going - let's say it's within a hospital, let's say it's a major medical center - they are going to a team within a hospital. And there with the experience they've had with that particular cancer or whatever it is, they're also doing that same kind of aggregate.
CONSTANTIN: That does happen. On the other hand, some of the things we've found have been, for example, we might find a drug that hasn't been used commonly but there's papers 30 years ago that said it was effective, and it turns out to still be effective. For some reason that has to do with incentives in pharmaceutical companies, something might fall out of favor or go overlooked, not come to the forefront unless you have somebody checking the details.
YOUNG: Well, you've had about 20 clients so far at MetaMed. Let's bring in one of them. He is Sandor Gardos. He's also a doctor. He's a psychologist. He joins us from San Francisco. And, Dr. Gardos, as much as you want to share, what was your situation? Why did you turn to MetaMed?
DR. SANDOR GARDOS: Well, I developed a condition that was completely resistant to anyone finding the cause or any viable treatments for over two years. And I had seen about 80 doctors, including some of the best of the best. And there was nowhere else to go. And a friend turned me on to MetaMed. And of all the people I saw, they were the ones that helped me figure out what was actually going on. They're the only ones that provided viable treatment, and it's the first time I have hope. They've been extraordinary. I mean I remember going to a number of people who up to Nobel Prize laureates and them saying you're out of my league, and I'd say I thought you were the league. And basically, no one had any ideas of what to do.
YOUNG: And again, I don't mean to pry, you know, only as much as you want to share but...
GARDOS: It's a neurologic condition. It is related to dopamine, and also, it has manifestations dermatologically.
YOUNG: What are your symptoms?
GARDOS: My symptoms are most akin to a form of atypical Parkinsonism plus.
YOUNG: Ah. So a Parkinson's like. Let's bring Sarah Constantin back in again of MetaMed. Where does your - you're studying to be - you're studying for your doctorate in math. So where does the math come in?
CONSTANTIN: We're developing, more or less, medical A.I. Basically, probabilistically, you can build statistical models given a person's symptoms, demographics and so on what's most likely to be wrong with them, what is the most likely treatment to help. So that's the part where my background has been coming in.
CONSTANTIN: I've been working on that.
YOUNG: Well, Dr. Gardos, obviously, you're a happy client. Do you mind my asking how much did you pay?
GARDOS: This was sort of a friend situation where they - and they were extremely taken with my case, and we got to know each other. And out of compassion, they - I have not paid.
YOUNG: Well, Sarah, we do understand that there is some financial aid offered by the company. But by and large, this is costing $4- to $5,000 on average, we hear, but 250,000 for one person who needed it and had it and possibly was life-saving. But what do you say to people who say you're getting investors, big name, big investors? Instead of working towards these individuals, why not work on a model that everybody can use?
CONSTANTIN: There a few parts to this question. First of all, that's exactly what we're doing. When we get this statistical modeling scaled up, that actually becomes a mass product.
YOUNG: So you're saying these people paying a lot upfront now are laying the groundwork for what you hoped to be something that can serve more?
CONSTANTIN: Yeah. I mean, think about cell phones. Once they were a plaything for the rich. That was actually back when they were more primitive. Part of the other thing is that medical tech usually tries to start by associating with a hospital or with the public health perspective. That imposes some limitations right upfront because you have to do it at a mass scale immediately. And we're actually trying to keep it personalized medical care for our beginning and eventually, we would like to be able to extend it to everyone.
YOUNG: What's interesting, you say personalized medical care because one of the criticisms is that it's not. That it's part of the move to move away from doctors who are fallible and move towards algorithms and computers that the thought is are not. Of course, we saw in the financial crash, they are. But what do you say to that, that this is a part of moving away from a doctor who might know you, who might know that thing that no team of researchers can know and move away from the personal?
CONSTANTIN: We're absolutely not trying to move away from doctors. We are not practicing medicine. But the current system requires doctors to not only be caregivers and practitioners and experts at treating the sick, but to also make them human encyclopedias, and that's impossible. The purely informational, what are the facts, ma'am? What's the map say is something we may be able to outsource the personal - the actual practice of medicine. It's something that always belongs to doctors.
YOUNG: Well, I guess, Dr. Gardos, we'll give you the last word. You're still working on your situation. The other thought is disseminating this information. Have you even had time to go back to some of these 80 other doctors to say to them, we found it?
GARDOS: I'd like to have the definitive, curative, absolutely, here's what worked. In case and when you get someone like this again, absolutely, I'm going to do that. I hope that this helps other people.
YOUNG: Well - and, our best to you because you - you're still fighting this thing.
GARDOS: Yes. I'm getting very close, thanks to them.
YOUNG: That's Dr. Sandor Gardos, a psychologist speaking to us from San Francisco and Sarah Constantin, vice president of research and analysis at the personalized medical research firm MetaMed. She joins us from the NPR studios in New York. Thank you both.
GARDOS: Thank you.
CONSTANTIN: Thank you.
JEREMY HOBSON, HOST:
And coming up next, a kid dives into the world of Wall Street and learns the perils of day trading. You're listening to HERE AND NOW. Transcript provided by NPR, Copyright NPR.