What Does It Take To Bring Transparency To Medicine?

Transcript

GUY RAZ, HOST:

OK. So this episode is about courage. We've heard from a war correspondent. And we just heard from Kimberley Motley, who represents women in Afghanistan. And now it's your turn.

LEANA WEN: I don't think that this is the right show for me. I mean, I love your show. I'm very honored and thrilled to be here, Guy. I just don't think that this is the right episode.

RAZ: Should we, like, find a different one for you to be in?

So this is Leana Wen, and she definitely belongs in this episode. Leana's an emergency physician by training and a pretty polarizing figure in medicine, which we'll explain why in a moment.

So you don't think you're courageous?

WEN: I think I'm determined. I think that I am not afraid to speak up when it's about defending my patients and defending my community and defending people who I really care about.

RAZ: And what makes her so unpopular in the medical establishment is that Leana thinks you have a right to know more about your doctor - where their money comes from. And the story of how she came to that view began with her mother.

Here's Leana Wen on the TED stage.

(SOUNDBITE OF TED TALK)

WEN: When I was 8, my parents and I moved to the U.S. And ours became the typical immigrant narrative. My parents cleaned hotel rooms and washed dishes and pumped gas so that I could pursue my dream. Well, eventually, I learned enough English. And my parents were so happy the day that I got into medical school and took my oath of healing and service. But then one day, everything changed. My mother called me to tell me that she wasn't feeling well; that she had this cough that wouldn't go away; that she was short of breath and tired.

Well, I knew that my mother was someone who never complained about anything. For her to tell me that something was the matter, I knew something had to be really wrong. And it was. We found out that she had stage four breast cancer - cancer that by then had spread to her lungs, her bones and her brain. My mother was brave, though, and she had hope. She went through surgery and radiation and was on her third round of chemotherapy when she lost her address book. She tried to look up her oncologist's phone number on the Internet, and she found it.

But she found something else, too. On several websites he was listed as a highly-paid speaker to a drug company. And in fact, often spoke on behalf of the same chemo regimen that he had prescribed her. She called me in a panic, and I didn't know what to believe. Maybe this was the right chemo regimen for her, but maybe it wasn't.

RAZ: So what'd you do? I mean, did you feel like he was compromised?

WEN: It's hard to know. We never asked him about it - probably because there was just too much fear. I mean, how do you ask your doctor whether he or she is getting influenced by the money that he or she is getting - right? That's a very difficult question to ask. So we never found out. Well, I'll tell you that that seed of fear blossomed. And my mother no longer trusted his recommendations, even when he prescribed antibiotics for pneumonia. She would wonder - is it because it's the right medication for me or is he getting paid by the drug company? And that made me look into the literature, too. And at the time, in 2008, a New England Journal of Medicine paper found that 94 percent of doctors have some affiliation with drug companies or medical device companies.

RAZ: Wow.

WEN: And there were dozens of studies to show that those affiliations do in fact influence prescription behavior. And that really shocked me and made me want to do something about it.

RAZ: And at that point, the thing that she wanted to do was to find out whether this kind of stuff bothered other people, too. So she gathered a team of researchers. And they started to survey patients about their health care.

(SOUNDBITE OF TED TALK)

WEN: One after another, our respondents told us that that doctor-patient relationship is a deeply intimate one; that to show their doctors their bodies and tell them their deepest secrets, they want to first understand their doctor's values. People want to know about their doctors first so that they can make an informed choice. As a result of this, I formed a campaign - Who's My Doctor? - that calls for total transparency in medicine. Participating doctors voluntarily disclose on a public website not just information about where we went to medical school and what specialty we're in, but also our conflicts of interests. We go beyond the Government Sunshine Act about drug company affiliations, and we talk about how we're paid. Then we go one step further. We add our values when it comes to women's health, LGBT health, alternative medicine, preventive health and end-of-life decisions. We pledge to our patients that we are here to serve you, so you have a right to know who we are. We believe that transparency can be the cure for fear. Well, I thought some doctors would sign-on and others wouldn't. But I had no idea of the huge backlash that would ensue.

RAZ: I mean, the feedback - the response was pretty overwhelming. Like, you were public enemy number one, like, (snapping fingers) overnight.

WEN: I didn't expect for so many people even to read about it. I wrote about it for an online blog for doctors - just describing what we're doing, encouraging people to write me if they're interested. And I got so many negative responses. We're talking thousands of negative responses of people saying, how dare you attack me personally? Don't you understand how difficult life is? And I should not be a doctor. I'm betraying my profession. I should in fact have my medical license be taken away from me. They even went as far as calling my boss and asking for me to be fired.

RAZ: Why do you think doctors reacted the way they did?

WEN: This in particular is the hardest thing for them because it touches the very core of who we are as doctors. We pride ourselves in not letting anything influence our behavior. And yet, we've seen the studies. Everyone has seen the studies that, actually, these financial incentives do impact you. So people know this. And when I bring it out into the open, people feel threatened because it's the core of their identity and also often their incomes. And the more people started talking about it, the more angry many doctors became.

I remember people started posting on these doctors' forums. And many of these doctors' forums, you have to register in your own name with your National Provider ID. And there was one particular instant that was particularly shocking. My Twitter account had gone down. And then I looked on this doctors' forum and someone took credit there for, quote, unquote, "Twitter-bombing" my account. And then various people wrote in and said too bad it wasn't a real bomb. Does anyone know where she lives? Does anyone know where she works?

RAZ: Were you scared?

WEN: I was. I remember calling my husband and talking to my friends and saying, maybe I should just quit this. I mean, this is not worth my life. And I didn't want my husband or my loved ones to be injured. But then I started hearing from patient advocacy groups - but also just regular people - who were overwhelmingly in favor of this. They said this is common sense, of course we want to know about any conflicts that our doctors may have. We want them to disclose this to us. There's also this sense from patients that it's not OK that our doctors get to decide what information we should know about. The information should be out there, and we should decide whether it's important for us.

RAZ: I mean, you call yourself determined. Some people would say courageous. What's the source of it? Where does it come from?

WEN: It's probably my mother, who was the reason why I got through a difficult childhood and upbringing, and every time I think back to what it was like when she was ill and what she went through and that initial moment when she found out about her oncologist. And this is what I want to prevent in the future. I don't want other patients to go through this realization and doubt and fear. And that I think is the source of my inspiration.

(SOUNDBITE OF TED TALK)

WEN: My mother fought her cancer for eight years. She was a planner. And she thought a lot about how she wanted to live and how she wanted to die. Not only did she sign advance directives, she wrote a 12-page document about how she had suffered enough, how it was time for her to go. One day when I was a resident physician, I got a call to say that she was in the Intensive Care Unit. By the time I got there, she was about to be intubated and put on a breathing machine. But this is not what she wants, I said. And we have documents. The ICU doctor looked at me in the eye, pointed at my then 16-year-old sister and said, do you remember when you were that age? How would you have liked to grow up without your mother? Her oncologist was there, too, and said, this is your mother. Can you really face yourself for the rest of your life if you don't do everything for her? I knew my mother so well. I understood what her directives meant so well. And I was a physician. That was the single hardest decision I ever made - to let her die in peace. And I carry those words of those doctors with me every single day.

RAZ: Did you have doubts at the time?

WEN: I still have doubts now. And I wonder - I think I will always wonder - what would have happened if we did try something else? Would it have made my mother live a couple days longer, a couple weeks longer? Could she have lived a couple months longer even? But I still go back to what she says, which is that she had suffered enough.

RAZ: I mean, it seems like she lived a life of courage.

WEN: You know, my mother suffered a lot but never talked about her suffering. She was an academic. She had a significant role in student activism in China. She came to the U.S. by herself so that she could provide for a better life for us and to get my family away from persecution in China. Eventually we ended up staying on political asylum. And she lived her entire life fighting and struggling against whatever forces may be. She ended up being a teacher. She worked in some of the toughest school districts in Los Angeles - not because she had to but it was something she believed she really needed to. And that's, to me, is courage - of saying I know what needs to be done. I'm going to serve my community. And I'm going to fight against any forces that come my way because these are the right things to do.

RAZ: Leana Wen. She is an emergency physician and founder of whosmydoctor.com. And she's now the new health commissioner in Baltimore. You can see her full talk at ted.npr.org.

(SOUNDBITE OF SONG, "COURAGE OF YOUR CONVICTIONS")

THE HOLLIEST: People tell you do what's right and set a good example. So have the courage of- the courage of your convictions.

RAZ: Thanks for listening to our show on courage this week. I'm Guy Raz. And you've been listening to the TED RADIO HOUR from NPR. Transcript provided by NPR, Copyright NPR.