A medical student with mysterious symptoms that mimic the signs of kidney failure. A man with debilitating pain that has lasted for over a decade and causes temporary paralysis. A young woman who gained 90 pounds in a year and started experiencing severe pain and gastrointestinal problems.
All of the patients say their doctors haven’t been able to figure out what, exactly, is wrong. And they’re all hoping that a hive mind of television viewers might be able to help. The patients will be featured on “Chasing the Cure,” a new weekly show debuting this week on TNT and TBS that digs into undiagnosed or uncured medical conditions. Led by veteran journalist Ann Curry, the live show will tap into a panel of doctors and take suggestions from viewers about possible diagnoses. “Chasing the Cure” has also created an online community and a Facebook (FB) group, where hundreds of people have already shared their own medical mysteries in hopes that other users might be able to help.
But for a show that’s looking for answers, “Chasing the Cure” also raises a number of ethical questions, from how the show will make sure patients understand the implications of sharing medical information on live television to how the producers will proceed when a participant can’t afford care. STAT spoke with Curry about those considerations and what she sees as the value of crowdsourced care. This conversation has been lightly edited and condensed.
Why did you want to get involved with this effort?
When I was first presented the idea, my first reaction was concern. I was asking how do you do this ethically? How do you do this responsibly? How do you do this not just in a way that feels like a TV show, but actually treats these patients with tremendous respect and care?
It’s always been true that not everybody can get the diagnosis that they need. It’s always been true that not everyone can get the right health care that they need. But what’s happened is that social media has allowed these realities to bubble to the surface. And we’re seeing it’s not a small problem, but a significant problem.
I have held everyone to this promise [to proceed ethically] every step of the way. That is the only way that I would be involved, is if we put the patient first. And that’s a period on the end of that statement. That meant that [for] all the decisions we make — who we we find as doctors, how we treat the patients, whether we wait at all to give them a diagnosis or data on their care or whatever it is, the legal questions involved, all of those things.
I’ve tried for more than 30 years as a journalist to give voice to the voiceless. … These are people who are appealing on social media because they need to be heard because they’re alone. They’re suffering, and they need help, and they’re reaching to the crowd.
Tell me about a time when you pushed the team to put patients first.
One of the first people we brought into the team is a medical ethicist to help us guide our decisions. We have a psychologist, a social worker, and other behind-the-scenes doctors. Plus we reached out to major medical centers so we can make relationships and talk to them about what we’re doing [so that] we can be connected with them and have access to their specialists. We are connected now to 52,000 physicians who we might be able to call upon to help us solve these cases. In addition, we have sought some of the most talented minds in medicine. There’s tons of talented minds in medicine. The problem is that a majority of Americans really don’t have access to them.
So this idea was OK, well, what happens if you take people who are reaching out for help and give them a chance to sit in front of a panel of highly qualified, talented, great minds and you let them have their cases studied, let them be heard? And then on top of that, you expose them to the crowd.
Now, this is the part that some doctors have a problem with, because [they think] the crowd is not going to solve the case. … But that’s not the issue. The issue is there are people out there who have experienced some of these same symptoms, or their mothers have experienced exactly the same symptoms, or they are nurses or doctors or EMTs. And they may know something. If you know nothing, and you’re desperate for answers, your chance of finding out what you may need to know is much better if you are connected than if you’re not. That’s just basic math, right? That’s just two plus two equals four.
We’ve talked about the responsibilities you have to patients who are coming on the show. What responsibilities do you have to viewers in relaying health information?
We live in a time of rampant over-self-diagnosing. We’re living in a time when everyone thinks that they’ve got the worst disease possible because we are constantly trying to guard against the possibility that we’re extremely sick. Why are people turning to WebMD? Why? Because they don’t have time with their doctors. So this is a snowball rolling downhill. You can’t make fun of the other patients trying to get more information to stay well and have a long life, if they can’t get this information from the people they trust and who should be able to have time with them.
So I totally understand why doctors are rolling their eyes and throwing up their hands when a patient comes in and says, “Are you sure that I don’t have some 20-letter Latin phrase that is some kind of disease?” But this is actually an outgrowth [of] a need, and that need is real. And it has to be addressed.
We are completely aware that we have to be careful about making sure that no information is shared that is incorrect. I’m a journalist, the showrunner is a journalist. But every major decision … is manned by a doctor. Doctors have huge influence on what data we put out on TV. … I am not going to allow any information on TV that is going to hurt people. So I will be extra cautious about that, because that’s my responsibility.
[On the online platform] we will allow interaction and we want to encourage it, because we want them to not feel alone. But we’re also going to have that monitored by a human being and with auto-monitoring. Clearly, there are some risks.
I spoke to some bioethicists about the idea behind the show. And one question they asked was what it takes to make sure people fully comprehend what it means to share their medical information with the world in some way.
Especially when they’re desperate, right? Do they understand what that means? We’re trying to guard against that. And we’re doing it in big ways and small ways. We’re having real conversations. We’re having them look at medical and legal documents looking at the risks. … We can only do our due diligence.
In addition to being the executive producer and trying to be a firm voice in defending these patients, I feel I am a patient advocate. So, for example, the studio where we’ll be broadcasting from actually has a doctor’s office in it [that] can be used for examinations, even for blood draws and things like that.
What does television want? Television wants to show that examination. And what am I gonna say? “Are you sure? Would you like to have that done in private? Are you OK about showing this in public?” … Sick people want other people to not be sick like they are. They want to rescue other people. … [They] want them to know they’re not alone. … So it’s interesting how people think through this stuff and what decisions they make. … We can’t judge that. But what we can do is listen and to really make sure they understand, as best as we can, what is happening.
We are trying very hard to recognize the human dignity of all people. And we’re also not trying to replace their primary care physician. These doctors are advisers. They’re trying to help [participants] get closer to getting the data they need. In some cases, to be honest with you, it’s very possible that some of these patients will not even have a primary care physician, because we’re also hearing cases from the underserved. We’ve had to sort of be very tender-footed, trying to walk through this minefield, trying to make sure that we don’t overpromise, but that we do as much as we can.
I imagine one of those mines would be what happens when you encounter patients who either don’t have good health insurance, any health insurance, or can’t afford to chase down the possible diagnoses they’re given on the show.
Exactly. We’ve had to face that question directly. And certainly, this project can’t afford to pay for the medical care for all the patients who are going to be involved. … We’ve had people, doctors already offering to donate and care for these patients who can’t afford it. So even though we can’t pay for all the medical care for all the patients, what we can do is have their stories heard by a broader audience and make them not be alone or feel alone. And when they’re not alone, there’s a greater chance that good things might happen. So I think it’s fair to say that some patients will be getting care that they can’t afford.