What Your Doctor Won’t Disclose

They told me that I'm a traitor to my own profession, that I should be fired, have my medical license taken away, that I should go back to my own country. My email got hacked. In a discussion forum for other doctors, someone took credit for "Twitter-bombing" my account. Now, I didn't know if this was a good or bad thing, but then came the response: "Too bad it wasn't a real bomb."

I never thought that I would do something that would provoke this level of anger among other doctors. Becoming a doctor was my dream. I grew up in China, and my earliest memories are of being rushed to the hospital because I had such bad asthma that I was there nearly every week. I had this one doctor, Dr. Sam, who always took care of me. She was about the same age as my mother. She had this wild, curly hair, and she always wore these bright yellow flowery dresses. She was one of those doctors who, if you fell and you broke your arm, she would ask you why you weren't laughing because it's your humerus. Get it? See, you'd groan, but she'd always make you feel better after having seen her. Well, we all have that childhood hero that we want to grow up to be just like, right? Well, I wanted to be just like Dr. Sam. When I was eight, 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 IV 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. It made her scared and it made her doubt. When it comes to medicine, having that trust is a must, and when that trust is gone, then all that's left is fear.

There's another side to this fear. As a medical student, I was taking care of this 19-year-old who was biking back to his dorm when he got struck and hit, run over by an SUV. He had seven broken ribs, shattered hip bones, and he was bleeding inside his belly and inside his brain. Now, imagine being his parents who flew in from Seattle, 2,000 miles away, to find their son in a coma. I mean, you'd want to find out what's going on with him, right? They asked to attend our bedside rounds where we discussed his condition and his plan, which I thought was a pretty reasonable request, and also would give us a chance to show them how much we were trying and how much we cared. The head doctor, though, said no. He gave all kinds of reasons. Maybe they'll get in the nurse's way. Maybe they'll stop students from asking questions. He even said, "What if they see mistakes and sue us?" What I saw behind every excuse was deep fear, and what I learned was that to become a doctor, we have to put on our white coats, put up a wall, and hide behind it.

There's a hidden epidemic in medicine. Of course, patients are scared when they come to the doctor. Right? Imagine you wake up with this terrible bellyache, you go to the hospital, you're lying in this strange place, you're on this hospital gurney, you're wearing this flimsy gown, strangers are coming to poke and prod at you. You don't know what's going to happen. You don't even know if you're going to get that blanket that you asked for 30 minutes ago. But it's not just patients who are scared; doctors are scared too. We're scared of patients finding out who we are and what medicine is all about. And so what do we do? We put on our white coats and we hide behind them. Of course, the more we hide, the more people want to know what it is that we're hiding. The more fear then spirals into mistrust and poor medical care. We don't just have a fear of sickness, we have a sickness of fear.

Can we bridge this disconnect between what patients need and what doctors do? Can we overcome the sickness of fear? Well, let me ask you differently: if hiding isn't the answer, what if we did the opposite? What if doctors were to become totally transparent with their patients?

Last fall, I conducted a research study to find out what it is that people want to know about their healthcare. I didn't just want to study patients in a hospital but everyday people. So my two medical students, Suhavi Tucker and Laura Johns, literally took their research to the streets. They went to banks, coffee shops, senior centers, Chinese restaurants and train stations. What did they find? Well, when we asked people, "What do you want to know about your healthcare?" people responded with what they want to know about their doctors, because people understand health care to be the individual interaction between them and their doctors. When we asked people, "What do you want to know about your doctors?" people gave three different answers. Some want to know that their doctor is competent and certified to practice medicine. Some want to be sure that their doctor is unbiased and is making decisions based on evidence and science, not on who pays them. Surprisingly to us, many people want to know something else about their doctors. Jonathan, a 28-year-old law student, says he wants to find someone who is comfortable with LGBTQ patients and specializes in LGBT health. Serena, a 32-year-old accountant, says that it's important to her for her doctor to share her values when it comes to reproductive choice and women's rights. Frank, a 59-year-old hardware store owner, doesn't even like going to the doctor and wants to find someone who believes in prevention first, but who is comfortable with alternative treatments. 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. Just because doctors have to see every patient doesn't mean that patients have to see every doctor. 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 interest. We go beyond the Government in the Sunshine Act about drug company affiliations, and we talk about how we're paid. Incentives matter. If you go to your doctor because of back pain, you might want to know that he's getting paid 5,000 dollars to perform spine surgery versus 25 dollars to refer you to see a physical therapist, or if he's getting paid the same thing no matter what he recommends. 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. Within one week of starting Who's My Doctor? Medscape's public forum and several online doctors' communities had thousands of posts about this topic. Here are a few.

From a gastroenterologist in Portland: "I devoted 12 years of my life to being a slave. I have loans and mortgages. I depend on lunches from drug companies to serve patients." Well, times may be hard for everyone, but try telling your patient making 35,000 dollars a year to serve a family of four that you need the free lunch.

From an orthopedic surgeon in Charlotte: "I find it an invasion of my privacy to disclose where my income comes from. My patients don't disclose their incomes to me." But your patients' sources of income don't affect your health.

From a psychiatrist in New York City: "Pretty soon we will have to disclose whether we prefer cats to dogs, what model of car we drive, and what toilet paper we use." Well, how you feel about Toyotas or Cottonelle won't affect your patients' health, but your views on a woman's right to choose and preventive medicine and end-of-life decisions just might. And my favorite, from a Kansas City cardiologist: "More government-mandated stuff? Dr. Wen needs move back to her own country." Well, two pieces of good news. First of all, this is meant to be voluntary and not mandatory, and second of all, I'm American and I'm already here.

Within a month, my employers were getting calls asking for me to be fired. I received mail at my undisclosed home address with threats to contact the medical board to sanction me. My friends and family urged me to quit this campaign. After the bomb threat, I was done. But then I heard from patients. Over social media, a TweetChat, which I'd learned what that was by then, generated 4.3 million impressions, and thousands of people wrote to encourage me to continue. They wrote with things like, "If doctors are doing something they're that ashamed of, they shouldn't be doing it." "Elected officials have to disclose campaign contributions. Lawyers have to disclose conflicts of interests. Why shouldn't doctors?" And finally, many people wrote and said, "Let us patients decide what's important when we're choosing a doctor."

In our initial trial, over 300 doctors have taken the total transparency pledge. What a crazy new idea, right? But actually, this is not that new of a concept at all. Remember Dr. Sam, my doctor in China, with the goofy jokes and the wild hair? Well, she was my doctor, but she was also our neighbor who lived in the building across the street. I went to the same school as her daughter. My parents and I trusted her because we knew who she was and what she stood for, and she had no need to hide from us. Just one generation ago, this was the norm in the U.S. as well. You knew that your family doctor was the father of two teenage boys, that he quit smoking a few years ago, that he says he's a regular churchgoer, but you see him twice a year: once at Easter and once when his mother-in-law comes to town. You knew what he was about, and he had no need to hide from you. But the sickness of fear has taken over, and patients suffer the consequences.

I know this firsthand. 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, but 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.

We can bridge the disconnect between what doctors do and what patients need. We can get there, because we've been there before, and we know that transparency gets us to that trust. Research has shown us that openness also helps doctors, that having open medical records, being willing to talk about medical errors, will increase patient trust, improve health outcomes, and reduce malpractice. That openness, that trust, is only going to be more important as we move from the infectious to the behavioral model of disease. Bacteria may not care so much about trust and intimacy, but for people to tackle the hard lifestyle choices, to address issues like smoking cessation, blood pressure management and diabetes control, well, that requires us to establish trust.

Here's what other transparent doctors have said.

Brandon Combs, an internist in Denver: "This has brought me closer to my patients. The type of relationship I've developed — that's why I entered medicine."

Aaron Stupple, an internist in Denver: "I tell my patients that I am totally open with them. I don't hide anything from them. This is me. Now tell me about you. We're in this together."

May Nguyen, a family physician in Houston: "My colleagues are astounded by what I'm doing. They ask me how I could be so brave. I said, I'm not being brave, it's my job."

I leave you today with a final thought. Being totally transparent is scary. You feel naked, exposed and vulnerable, but that vulnerability, that humility, it can be an extraordinary benefit to the practice of medicine. When doctors are willing to step off our pedestals, take off our white coats, and show our patients who we are and what medicine is all about, that's when we begin to overcome the sickness of fear. That's when we establish trust. That's when we change the paradigm of medicine from one of secrecy and hiding to one that is fully open and engaged for our patients.

Thank you.