A Fear Of Sickness Or A Sickness Of Fear?

Doctor Transparency

by Kim Keller

Dr. Leana Wen’s interest in bringing transparency to the medical profession began back in 2003, when she was still a medical student.

Leana’s mom, Sandy, had been diagnosed with stage IV breast cancer, which had already spread to her lungs, her bones and her brain. During her third round of chemo, Sandy happened to misplace her address book, so she went online to look up her oncologist’s phone number, and that’s when she discovered that her oncologist was also a highly paid speaker for the drug company that manufactured her prescribed chemo regimen.

Sandy called her daughter in a panic. It made her question her treatment plan. Is the chemo regimen right for me, she wondered? Or is it being prescribed because of my doctor’s financial relationship with this particular drug company?

Leana and her mother weren’t sure what to believe, but the answer was almost secondary. “When it comes to medicine,” Dr. Wen explained, “having that trust is a must, and when that trust is gone, then all that’s left is fear.”

Wen has enjoyed a long and varied career, serving in many capacities, both as a physician and public health official, including, most recently, as the Commissioner of Public Health in Baltimore, MD. And in all her various positions, Wen has discovered that many doctors share that same fear she described above. The absence of trust is by no means restricted to the patient population.

Indeed, there was an incident that left a great impression on Wen during her medical school years. She was caring for a 19-year old boy in a coma, whose body had undergone enormous trauma when he was hit by an SUV. The young man’s parents had immediately flown in from Seattle, traveling some 2,000 miles to be with their son in the hospital. The parents obviously wanted to receive as much information from the medical team as possible. In fact, they asked to be present when the medical team was doing rounds in order to help the parents understand exactly what was happening with their comatose son.

To Wen’s surprise, the head doctor refused this request because he was concerned that the parents might witness mistakes in their son’s care and end up suing the hospital.

“We’re scared of patients finding out who we are and what medicine is all about,” said Wen. “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. 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.”

In 2013, Wen conducted a study that endeavored to find out what the average person wanted to know about his or her own healthcare. Wen instructed her medical students to ask this simple question of ordinary people on the street, and the most prevalent response was: “Who’s my doctor?”

Wen understood this answer. Drawing on her own experiences as a physician, and, even more importantly, as a daughter helping her mom navigate the healthcare system, Wen felt a comparable need for this kind of transparency. So, in October 2013, she started a campaign called — yep, you guessed it — Who’s My Doctor? The Total Transparency Manifesto. Her hope was to encourage doctors to reveal on the Who’s My Doctor website all necessary and relevant information in order to create transparency for their patients and for the medical profession in general.

Doctors are asked to voluntarily disclose:

  1. With whom they are affiliated; for example, pharmaceutical companies, medical equipment providers, etc., and what the nature of their relationships might be, such as board members, directors, paid consultants, etc.
  2. How they are financially compensated. For example, does the doctor get paid a certain rate for each test or procedure? Or does the doctor make the same amount of money regardless of specific recommendations? Does the doctor get paid to use certain devices or prescribe particular medications?
  3. What are their stated beliefs on relevant topics? For instance, does the doctor believe in alternative medicine? What are the doctor’s views on end-of-life care? Preventive care? Women’s health?

Dr. Wen’s determination to bring integrity back to the medical profession is inspiring, but it is not universally applauded. Although many doctors praise her efforts, there are nonetheless many who do not. Dr. Wen has been the focus of considerable outrage from doctors who resent her putting a spotlight on this issue. Yet she perseveres courageously.

As with many of us, Dr. Wen’s path has been shaped by a health ordeal involving a family member — in her case, her mother. We at In Care of Dad appreciate Dr. Wen’s struggle to improve the medical profession, and I am personally grateful for her determination and leadership. I’ve just recently purchased her book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, which I’ll be reviewing for you soon.

I hope you’ll take a look at Dr. Wen’s TED Talk about her Who’s My Doctor? campaign.


Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.

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