Can social media save lives? In her new series, Dr. Lisa Sanders is trying to find out. The Yale School of Medicine physician and educator is eminently qualified for the task. For the past 17 years, Sanders has been writing the popular "Diagnosis" column for the New York Times, which inspired the television series "House." Now, the author of "Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis" brings her Times column to life with Netflix's gripping, binge-worthy "Diagnosis."
The show follows patients on a heart-stopping (sometime literally) race to find the answers to their baffling conditions, harnessing the power of crowdsourcing for clues.
Sanders sat down with Salon Talks recently to discuss medical mysteries, and why, despite the drama of "Diagnosis," this is "probably the best time" in history to be a patient. Watch our conversation or read the interview below.
This gripping, puzzling series begins with you, and your own transformation from someone who believed that a diagnosis was always a finite thing, like solving a math problem, to it becoming a detective story. How did that evolve for you, as something that is such an integral part of your career, your writing, and your teaching?
I came to medical school after a brief career in television. During those ten years or so, I spent a lot of it covering medicine. That's one of the reasons I decided to go to medical school. During that time I felt, "I know medicine. I got this. I can do medical school." And I could do medical school. But when I got to the third year, when you actually get out of the classroom and go into the hospital and see how doctors work, I saw that what I thought of diagnosis was was wrong much of the time — or for the most exciting parts, in any case.
I thought — and I think most people think — the diagnosis is like the multiplication tables. If you have this collection of symptoms, it's clearly this. Four times six is always 24. I realized once I got to where doctors talked about these things, it was not the case. Four times six could be 24, but it could also be something else. You'd have to get more information to find out which it was.
I found out that [diagnosing] was not the multiplication tables, but it was [more like] Sherlock Holmes. I first made this discovery in one of the education sessions that we have, called resident reports. In these, everybody comes together — the medical students, residents, established doctors — to hear a case presented the way it presents to a doctor. A patient comes in. You don't know this patient. You know what their history is, and they have a problem that they want to talk about.
You slowly get the information about that. Then you get the exam, and then you think about what tests you want to order, and then you think about what could be going on. It's this process of data collection. Sometimes they are red herrings, sometimes there are false leads. Sometimes that key suspect is not always in the room. The case that I first heard, it was this young woman who had strangely swollen legs. She turned out to have something called lupus nephritis. It was an aspect of the disease called lupus, which it never was in "House," that affected her kidneys. I remember thinking, "This is a detective story. This is a mystery that has to be solved."
I was interested in it right from the start, in part because I realized if I didn't know that this is how diagnosis was, there were lots of people who didn't know. I think that that's not an accident. I think doctors are pretty uncomfortable with the idea of patients knowing how much uncertainty there can be surrounding a diagnosis. I think that they didn't like to talk about it, but that that's something that patients want to know, and something that doctors should share. I've been obsessed with this story ever since.
As we know, the price of misdiagnosis can be fatal for patients. The transparency of saying "We don't know" is uncomfortable for doctors and for patients, but is it certainly beats the alternative.
There has never been a time in history or in medicine when you were more likely to get the right diagnosis than [r]ight now. I've looked at areas where people have gotten the wrong diagnosis previously, and to be honest, I did that because that was the way I can indicate my readers this is tough. In the really tough cases.... people often get the wrong diagnosis first.
But diagnosis is a process, and as a process, it's been much more successful now than it ever has been in the past. We know more, we can test for more, we can think about more. That's a tremendous boon for patients.
It also makes things more difficult for doctors. There's a lot more to it. It's a great time — if you have to be sick and if you have something mysterious, this is probably the best time [to be alive] so far.
We are moving towards more personalized medicine. We have many more options in terms of genetic testing. Yet mysteries still remain, and that can make it even more frustrating for patients who feel like they've exhausted many more options than they may have a generation ago. It also raises ethical questions in terms of how far we are going to go in the healthcare industry. These tests, and this interrogation of symptoms, do not come cheap. How do you feel about the ethical questions?
I think the cheapest way to treat somebody is to get the diagnosis right. That's the least expensive way, because you get the fewest number of tests and you can get right onto therapy. You have the fewest tests, the fewest complications, and access to therapy that's going to be appropriate. From an economic point of view, getting the diagnosis right is the most important thing we can do.
It's not easy, but most of the time most people get the right diagnosis very early on. Most people have what most people have. I'm interested in the tough cases, the cases that people have gotten wrong in the past, because that way I can see human thought. What's interesting to me is how people think through problems and how people deal with uncertainty. That's why I focus on those. But most of the time, when most people go to the doctor, they get the right answer and they go on with their lives.
When you talk about the mind and the uncertainty aspect, that is a big element of what happens when you have a mystery. It becomes not just about the ailment itself and the symptoms, but the stress that goes along with it. As is very well documented in this series, patients then face questions of, "Is this all in your head? Is this a psychiatric problem." That is an element that then goes hand-in-hand with the symptoms. Whether it's a psychiatric problem or not, the stress, the frustration and the ongoing pain of living with something that is not being treated adds another layer to the disease. Can you talk about what's unique about having a condition that is hard to diagnose, from a psychological point of view?
I'm looking at a single person and looking at it from that person's perspective. That's how my column goes. That's how the show goes. But from a doctor's perspective, if I see fifteen or twenty patients in a day, very few of them have something that's at all challenging to think of. If it's flu season and you have flu symptoms, it's a very, very good chance you have the flu.
The other thing to know is that even with new complaints, even when you have somebody who's complex or how has a new symptom, most of the time, those symptoms go away just on their own with a watchful waiting — "Here, let's take some ibuprofen, let's temporize, let's see if it goes away" — because in fact, most things do go away on their own. Either they're viral and so you get over it, or you pulled something. It's usually something transient.
You get rid all of the ones that don't really require much thought and rid of the ones where you're just going to wait and see, and then you're left with the ones that might take some time. I know that it's very frustrating for patients to not have an answer. It's very frustrating for doctors. I think most of the time, most doctors don't immediately send you to a psychiatrist, but it's something that must be considered. Depression and anxiety and a lot of things often manifest not as a psychiatric illness, not as a, "Oh my gosh, I feel so anxious and nervous," but, "Oh my God, I have such a terrible headache."
The mind is part of the body, and when it's distressed, it expresses itself. It can express itself in a lot of different ways. When people hear doctors moving to see if it's a psychiatric illness, they shouldn't immediately think, "My doctor's dismissing me and just thinks I'm crazy." It's part of every differential. Let me just say the doctors often — I suspect, and there's evidence to back me up — often go to this a lot more readily for women than for men. It's absolutely true.
It's happened to me as a patient. It's happened to me as a doctor. We all have to gut check ourselves and go, "Really? Really? You're going to go there already?" It's a common problem in thinking. We all are just compilations of assumptions, and prejudice, and bias, and all that other stuff. We all as human beings have that. But it's still part of what a doctor must think about. I know for a patient, it must be horrible, too. And as a patient myself, it has been horrible to have people just dismiss my concerns. My doctor's favorite line is, "Oh, you're just old." "I beg your pardon. I am not old. Speak for yourself, sir!"
That's not great bedside manner. And it does feel like there is more movement now towards patients talking about their symptoms to each other. We are seeing more of a conversation about the way that patients are spoken to, about the way that they can be dismissed, especially women. Do you feel that the healthcare industry is taking notice of that? Is there more of an active movement on the side of healthcare and doctors to say, "We have to make sure that we are sensitive to this and we are particularly sensitive when women come in and say that they have pain or that they have mysterious symptoms. We need to take that in context, and assure the patients in a different way that maybe we would have even ten years ago"?
Of course I think so, but I'm part of a teaching program that teaches people who want to be primary care doctors, so we are all about listening and eliciting the patient's story. We have courses that the residents are expected to master. We have them take cameras into the room with them so that they can record themselves with the patients. We care about that, and I believe ours is an extraordinary program. I think it's also part of a growing concern in medicine, that how a doctor hears a patient and the patient's story and how the doctor gives that diagnosis back is an important part of how medicine works, and one that hadn't been given enough attention previously. I think we're trying to address that. Our failures are ever so much easier to remember than our successes.
As this series makes so beautifully clear. when you move from the symptoms to the person, and you see the person and his or her circumstances, his or her past, his or her experiences, you move much closer to getting a diagnosis. It's not just about the symptoms. It's about the individual and everything that brought them to that place. That is definitely a lesson for patients when talking about symptoms. We as patients need to consider that we don't just talk about our pain, we talk about our histories, and also that doctors are listening to that side of it as well.
Another thing that also this show does so well is it also puts patients in the context of their families. It makes clear the impact that an undiagnosed or undiagnosable condition has on parents in particular, but also on spouses, partners, children, and the impact that this has on the community. That patient is never alone. Why was it so important to add that element of the stories, to take these patients in context of their parents and their loved ones?
Illness affects the patients, certainly, but it also affects everybody around the patients, and not to acknowledge that would be dumb. As a doctor, when we see the patient, we don't see their entire family, or their husband, or even their pets, their children, the rest of their family. We don't see them. But I think we all know that they're there in the room. Whatever we say about this patient, or to this patient, or figure out about this patient, is going to have a resonance with all those people.
One of the things we teach residents is to ask them to say empathetically and truthfully, "It sounds like this symptom has really affected you. Can you tell me more about that?" We encourage our doctors, our residents to investigate these aspects because people are not solitary creatures. We're very social creatures, and what happens to us happens to our entire family.
I can't let you go without talking about the thing that is the driving element of "Diagnosis," the social media aspect. It is fascinating to watch and encouraging and makes you feel good about social media for a change. The way that people reach out and volunteer to help and volunteer their own experiences is a beautiful thing, and crowdsourcing symptoms can be amazing.
This is becoming more and more a part of the healthcare experience, whether or not you do it in the context of something like this or as a patient yourself. You're going to start Googling around and seeing what other people have. The other side of that though is that can also be a means of misinformation. It can lead to health crises, as we have seen from the anti-vaccine movement. How do we temper this? How do we as smart consumers and smart patients weed through the vast amount of information and the vast number of people who are talking about their own symptoms and illnesses online in a way that is productive, useful and intelligent?
Social media is just an exaggeration of something that goes on all the time. Well before there was Google, there was your mother. "I have this pain, mom. What do you think it is?" We all do this. We talked to not just our mother and father, but children, colleagues, friends. We vet our symptoms through our own networks. Google is just a much, much bigger version of that.
There's one important difference. We know that our crazy aunt has these nutty theories about this, that, or the other thing. When we ask her opinion, we know that it's possible that it will be different than other people's opinions. We know the context from which it's coming and that gives us other ways to judge the information.
On the internet, you don't know where the information is coming from. I would say that bad information looks more and more like good information, and so just looking at the information itself does not tell you if this is reliable or not reliable. It all looks a lot alike out there. When you read a study, it's very hard if you don't know where it was published, or who the authors are, or what their reputation is. It's hard to judge. I encourage my patients to use government resources. Maybe that sounds crazy, but really if you go to NIH.gov or cdc.gov, you're going to get reliable information that you can trust and that you can use. It may not be complete, but it's going to be true and reliable, and possibly useful.