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Expert Q&A: Crowdsourcing Diagnoses on 'Chasing the Cure'

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September 12, 2019

By Debbie Koenig

Who doesn’t love a good round of armchair physician? The new show Chasing the Cure Live, which airs Thursdays at 9 p.m. ET on TNT and TBS, creates a large-scale version with real-life cases. Before and during each broadcast, host and executive producer Ann Curry invites viewers and medical professionals to read up on casefiles at the show’s website. If a collection of symptoms strikes a chord, anyone can offer suggestions there or via social media. With this type of crowdsourcing, the show aims to solve medical mysteries for patients who may have been suffering for years.

WebMD spoke with Sheila Sahni, MD, one of four doctors who investigate the cases, then discuss the results live on-air with the patients and Curry.

Our interview has been edited for clarity and length.

WebMD: Chasing the Cure uses crowdsourcing to solve medical mysteries. How does that work?

Dr. Sahni: We have crowdsourcing in two ways. Casefiles appear online before the show airs, and sometimes there’s follow-up to cases that have already been launched. Having the cases on the website allows viewers—they might be patients, caregivers, or medical personnel—to engage in an online medical community, where they can suggest a diagnosis or share their journey with something similar. At the same time the larger medical community is also looking at those cases. Like with Quendella, who needed dental reconstruction. A member of Dr. Goldstein’s team saw her casefile online. That person said, “I think we could help that patient,” and told the doctor to tune in. That’s crowdsourcing at its finest, within the medical community.

WebMD: The show airs live. How does that help you make diagnoses?

Dr. Sahni: It allows us to leverage media in real time. We have a crowd-care center showcased on the live show, where you can see the dynamic of viewers who are engaging. Whether they’re patients, caregivers, or medical professionals, it allows us to leverage that in real time, while we’re discussing the cases. It also allows us to create a call to action, and that’s really unique. We can highlight that in this moment, during the show, we need to go a step further. Sometimes we need a sub-specialist within a category. The live aspect also reaches researchers, geneticists—it helps move patients forward.

WebMD: What’s it like trying to solve these cases?

Dr. Sahni: It’s extremely challenging. A few of our cases have seen multiple specialists, sometimes at top medical centers, but others haven’t even been seen by a specialist. The nature of medicine is that discussion brings about new ideas. We’re a fresh set of eyes linking everything that’s been done, and we bring up new concepts by wanting to prove or disprove certain diagnoses. When you get four minds together from very different backgrounds, you get a full assessment, and we work together. We have a lot of medical support in the background as well. But they are extremely difficult cases.

WebMD: Have you noticed any common themes among the cases?

Dr. Sahni: Two broad things have struck me: From a scientific standpoint, the show highlights the value of genetic testing. Depending on how you were trained, a medical professional may not know to recommend genetic testing. I’m a cardiologist, so in my practice I rarely recommend that. But the show demonstrates how valuable it can be. It’s a niche field in medicine but it highlights the value for people who are currently in medical training—medical school students, nurses, and others.

The other common theme is that the show highlights the need for coordinated medical care. If you see multiple specialists, they should be talking to each other, even if it’s just three times a year. Each should know what the other specialists are doing. I'm in private practice, and it's very fragmented. It’s really important for me to say, “What is your kidney doctor doing? Tell me what's going on with your endocrinologist—did they adjust the medication?” You really need your specialist to be cross-talking and at least understand what each person is doing with their organ system. All of that really needs to be coordinated through the primary care physician, and a few of our cases have not had primary care physicians. In other cases, patients have lost touch with the primary care physician because they’ve been seeing all these specialists, so their care gets fragmented.

WebMD: Most of the patients on the show have been dealing with symptoms for a long time. How common is it for symptoms to stump multiple doctors?

Dr. Sahni: It’s more common than you think. This is why it’s really important to have a primary care physician, but many Americans don’t have one. Your progression to getting a diagnosis happens through them, while you’re going to different specialists who rule things out or help think outside the box. Often patients get a diagnosis, but it doesn’t resolve the one thing that’s really bothering them.

WebMD: What advice would you give to people who are living with their own medical mysteries—how can a person who’s suffering know they’re not seeing the right specialist, for example?

Dr. Sahni: The message on the show is that if you’re a patient and you’re not getting the answers or the care that you need, be your own advocate. It’s ok to search outside what’s being offered to you. An important part of healing is the satisfaction of understanding why you’re in pain. You might have a diagnosis of hypothyroidism but it’s your knee pain that’s bothering you. It’s important for that to be addressed for you to feel at peace. Sometimes that takes going outside of what’s being offered to you, being your own advocate.

Education is very important, building public awareness of medical conditions and public awareness of next steps. That’s what I really love about the show. When the four of us are talking in doctors’ deliberation or on the panel with Ann, live, what I hope speaks to the crowd is that there are important steps in medicine, and those steps help to build the diagnosis. Seeing a new specialist can be inconvenient and annoying. You’re telling your story again, financially it can be a burden, there might be transportation issues. But it’s important to take those extra steps to get to the diagnosis.

WebMD: Often the recommendations include pretty intensive follow up with specialists. How does a patient’s health insurance figure into those recommendations?

Dr. Sahni: We go through a large legal and ethical process on the back end, ensuring HIPAA compliance. Health insurance is a major stakeholder in our healthcare system, and because of that sometimes it dictates the way patients navigate through the system. We do use a patient’s insurance. For legal and financial reasons, we can’t pay for their care. So we work outside and within the medical system, and through crowdsourcing we’ve gotten pro bono work. For instance, Dr Goldman is going to treat the patient who was on the show free of charge. We do use the system, but the platform allows for different physicians, who might be local to the patient, to provide help and weigh in.

WebMD: For someone who’s not able to get their case featured, any suggestions?

Dr. Sahni: Anybody who’s interested can become a registered, verified user on the website and submit their casefile. As long as community guidelines are met, they can start getting the crowdsourcing benefits—you don’t have to appear on the show to benefit. I’d encourage anybody who’s interested to submit their casefile and become a verified user.

WebMD: Which cases did you find most moving/exciting?

Dr. Sahni: When we found out about Debra and Delaney being diagnosed as 7th and 8th patients in the world with Warburg-Cinotti syndrome, that was an absolute hallmark in my medical life. The suffering they went through, the feeling of isolation, all quelled by receiving a diagnosis. That moved me in a way I’ve never been moved. Physicians, we feel the suffering of our patients. The first thing we say in the Hippocratic Oath is “do no harm,” and the psychological impact of these medical conditions have harmed patients, it’s caused them to suffer. To see them feel some sense of relief, some sense of connection to who they were before they were diagnosed, it's really been heartwarming for me.

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