Calling All Doctors and Announcing New Campaign for Total Transparency

Our healthcare system is broken and in dire need of reform. We all know the statistics: the U.S. spends $2.7 trillion on healthcare, 30% of which is waste in the form of unnecessary tests and unnecessary treatments. Conflicts of interest are rampant, with 94% of doctors reporting an affiliation with a pharmaceutical or device manufacturing company, and many more insidious influences including salaries being tied to “productivity”. Dozens of studies have shown that these conflicts of interest have a real impact on care, and are a major driver of excessive cost and avoidable harm.

On my recent book tour, I discovered an even bigger problem than the cost of care. There is a rampant and growing epidemic that we seldom discuss—the epidemic of fear. It’s understandable why patients are scared when they come to us. They’re not feeling well. They’re scared of what might happen.

But there’s another layer of fear, one that begins and ends with trust. When my mother was diagnosed with metastatic cancer, it took her months to find an oncologist she liked. One day, while trying to locate his office number online, she found a listing for him as a highly-paid consultant and speaker for a drug--the same chemotherapy drug that he’d put her on. This might have still been the right treatment for her, but it made her wonder, and it made her scared.

Traditionally, medicine has maintained a certain mystique. While there has always been information asymmetry, patients and doctors established longstanding relationships, and patients trusted that doctors had their best interests at heart. However, today’s medical landscape is very different. Few patients have longstanding relationships with their doctors. They have little to go on when deciding who to trust with their health, then are kept in the dark on matters ranging from cost of care to doctors’ motivations to necessity of tests and treatments.

In a time when they are already vulnerable and scared, patients have become even more afraid that they may not be receiving the right care for the right reasons. Doctors, too, have become afraid of their patients; much has been written about the fear of malpractice leading to hiding mistakes and practicing defensive medicine.

This mutual fear has led to distrust, disconnection and poor medical care. The driver of fear is secrecy and shame, and the antidote is honesty and transparency. Doctors are public servants whose duty is to be accountable to our patients. We need to break through the barrier of fear by sharing with our patients and the public who we are.

This is why I'm starting a new campaign, “Who’s My Doctor? The Total Transparency Manifesto.” Participating doctors produce a voluntary, public disclosure statement that includes the following: revenue streams of all payments, salary contribution and how salary is determined (i.e. hourly, RVU system, incentive/bonus), paid and unpaid board membership, investments, volunteer activities, professional interests, hobbies, and philosophy of practice.

Doctors already disclose much of this information when they apply for jobs and when they submit to medical journals. So why shouldn’t this information also be available to the public? Our patients have a right to know what influences their doctors may have that affect their care. It holds doctors accountable to our patients while at the same time humanizing us and reinforcing our role as socially responsible public servants.

Many patients may well decide that this information is irrelevant and never look at it. However, it should be available in a public, easily searchable database for those who do think it matters. Patients then have the option of identifying a doctor whose philosophies match their own. They can also help to encourage their doctor to participate in this project. 

Many doctors may have qualms about their information being available in such a public forum. However, in the era of Google and social media, much of this information can already be found online, and having a voluntary disclosure gives more control to the doctor. Also, experience with other transparency pilots such as Open Notes has demonstrated that openness leads to better communication, more trust, and better care, and it only follows that a more open relationship with our patients leads to less fear and less malpractice.

I believe that this form of radical transparency is paradigm changing. It is changing the culture of medicine from one of secrecy and mystery to one that is totally open to patients. It is a public demonstration that patient interests are primary, that reaffirms the reasons why each of us went into medicine. Every time I tell my patient about my decision to be a totally transparent doctor, every time I share my Total Transparency Manifesto, I are saying, I’m your doctor. I’m looking out for you. I’m free of influence that could affect you. Don't be afraid of me; trust me. I’ll be vulnerable with you.

Over the last few weeks, I’ve been discussing this idea with my colleagues and my patients. So far, I have myself and 10 other doctors who are willing to be totally transparent doctors. I’d love to have doctors of all specialties to participate, to say, I’m doing what I can to restore professionalism and break down the barrier of fear.

I’d love to have you join us. What you need to commit to is to write a Total Transparency Manifesto for the website (full website TBA; see more information and my manifesto on my webpage), tell your patients about it, and share your experience with me and the readers on this blog. How did it make you feel. Scared? Uncomfortable? Defensive? Liberated? And how did your patients respond?

And patients—what do you think? Please post your responses. Over the next few months, I’ll be posting my own experiences as well as the experiences of my fellow transparent doctors and our patients. Please join us in this new mission to counter fear and restore trust.

“Patients at Front and Center” & Other Dispatches From Stanford Medicine X #MedX

I have a confession: I was anxious about attending this week’s Stanford Medicine X conference. While I’m hardly anti-science, I advocate for the return of listening and a refocusing on the art of medicine. I write regularly about the low-tech revolution to healthcare reform—and here I was about to speak at a conference that’s “the intersection of medicine and technology".

My fears turned out to be unfounded. Rather than being a tech-fest, Medicine X sets itself apart from all the hundreds of medical conferences I’ve attended because patients are front and center. Patients formed the advisory panel; patients presented during every session; and, in fact, patients were the VIPs seated prominently at the front of the room. As multiple attendees noted, when there was a question, everyone turned to the patient—not the physician—for the answer.

Halfway through the conference, I had a realization: isn’t this how every medical conference should be? In fact, isn’t this how medicine is supposed to be, with the patient as an integral partner—and driver—of healthcare?

The three days of Medicine X were filled with dramatic examples of this. E-patient and cancer survival Liza Bernstein discussed the importance of dignity in healthcare: “It’s invisible, but just as important to us as oxygen.” Marble staircases and fancy furniture can’t make a good healthcare experience if respect and empathy are missing. “No matter how dire things are, you can’t let your dignity be taken away,” she urged.

Sam Gordon, an e-patient with terminal pancreatic cancer, shared his goals in health. “When the outcome is known, when curing isn’t possible, doctors have to heal,” he said. “My doctors are comfortable with ‘scientific time’, but how about let’s talk about my pain?”

There were many poignant moments when people shared their stories. They are reminders that in the often-sterile and detached environment of healthcare, it’s OK to show emotion. Emotion allows us to bond. Designer Amy Cueva contends that emotional intensity can be indicators of unmet need. “You must pay attention to pain, frustration, and anger,” she said. Our responses to the many authentic, emotional voices are testament to the critical importance of the story.

Both patient and providers discussed how the root of so many problems is miscommunication and lack of understanding. Stories help us connect, inspire, and heal, and Medicine X provided the venue to share our stories. It offered the space for disparate groups to break down our silos and work towards a mutual understanding.

Towards the end of the final day, I had another realization. I looked around the table I was sitting at. There was another provider, two patients, a hospital administrator, a software developer, and a researcher. We were attending the same sessions and participating in the same discussions—we were literally, in Katie McCurdy’s words, walking in each other’s shoes.

At the end of Medicine X, I feel invigorated. I’ve met some amazing advocates in the U.S. and internationally who are working towards the aim of participatory medicine and patient-centered care. I’ve listened to many stories and shared my own. 

More than anything, I am thinking, what an honor it is to be a physician! As Jason Albrecht says, what a great privilege it is indeed to “walk alongside, to guide, and to follow our patients.”

Goldilocks Medical Care: Not Too Little, Not Too Much….

In my last two blog posts, I discussed the harms of a new epidemic: too much medical care. We also don’t want the opposite, of enough care care. In fact, much of the driving force leading to overdiagnosis and overtreatment is this fear of rationing.

So what can you do to ensure that you obtain just the right amount of care?

It isn’t easy—if it were, if there an algorithm that would give us the answer, then we wouldn’t have the Goldilocks problem (“Is it too little? Too much?”).

Here are 5 suggestions that may help:

First and foremost, work in partnership with your doctor. The most critical key to getting good medial care is a trusting relationship between you and your doctor. This is not to say never question your doctor; but rather, develop a relationship of mutual respect such that you are the expert when it comes to your body, and the doctor is the expert when it comes to medicine.

Second, make sure your doctor listens. Study after study shows that the patient history will reveal the diagnosis in 80% of the cases, without the need for any tests or further interventions. If your doctor orders tests instead of listening to your story, that leads to unnecessary testing—and potential misdiagnoses. Prevent this by telling a good story, and making sure it’s heard.

Third, ask about your diagnosis. Understanding what you have is key to figuring out what should follow. Before you get any tests done, ask your doctor what he thinks you might have. This gives you some idea of what tests may be necessary, and also focuses your doctor to remember the important tests and have a justification for tests ordered.

Fourth, ask about every test done. Every single test has risks, so make sure you understand why each test is done. Ask about the risks. Ask about how it would change management: what happens if it’s negative? What happens if it’s positive? And, importantly—what happens if nothing is done at all? This helps you gauge how emergent (and also how necessary) a particular test is at this point in time.

Fifth, do your own research. This is particularly true when it comes to treatments. Look on the Internet and ask your friends and family. Be aware that not all information is equally credible, but at least this helps you formulate questions to ask your doctor. It might also help to look up your doctor and see if she has conflicts of interest that you may not be aware of: information about drug company affiliations, for example, can be found online. Write down questions, and ask them.

None of these suggestions are foolproof. These five steps can help begin the process for you and your doctor to work together to identify the right tests and treatments for you. If you have other thoughts or ideas that work, please write your comments below.

Where to Begin the Conversation on Overdiagnosis

One of the many takeaways from the recent Preventing Overdiagnosis Conference is that it’s hard for doctors to tell their patients that too much care is bad.

For so long, the rhetoric has been about the danger of too little care. Newspapers brim with stories of death from missed diagnosis and lack of access to care. TV shows glorify the detective-doctor who doesn’t give up and persists on ordering test after test in order to solve an esoteric case.

Over the last decade, there is mounting evidence illustrating the harms of overdiagnosis and overtreatment. Risk factors have been turned into diseases, and diseases are being created for the purpose of selling medications. Dartmouth’s Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of an existing medication that was going off patent. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for further testing and more care.

Who is to blamed for “selling sickness”? No doubt, big pharma and hospital corporations are culpable. They feed into patients’ fears. Maybe your doctor hasn’t heard of this “new” disease. Maybe she has financial incentives to prescribe you the rival medication. Why not take control of your health, and heed the advertisements to “ask your doctor about” the latest medication and the full-body CT scan?

There is another party that is just as guilty in the crime of disease mongering. It is doctors who are complicit with drug companies by speaking about “new” diseases and prescribing unnecessary medications. It is doctors who are complicit with hospitals by ordering unnecessary tests. It is doctors who instilled in our patients the blind faith in technology and the boundless optimism in treatments.

Combating overdiagnosis must begin with doctors acknowledging that we are part of the problem. The foundation of medical care is trust, and this trust is being eroded by financial incentives and conflicts of interest. We need to address this and reassure our patients that we are fully on their side.

Just as our profession stepped up to address critical issues such as access to care and medical error, we must have the courage to admit our contribution to the growing health threat of too much care. This will not be easy—but we must have the courage to reinstill trust, and do what’s right by our patients and our society.

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This article previously appeared in and reposted with permission from British Medical Journal's blog.

“Winding Back the Harms of Too Much Care”

I just returned from a thought-provoking conference at Dartmouth. Entitled Preventing Overdiagnosis: Winding Back the Harms of Too Much Care, and co-sponsored by Dartmouth University, British Medical Journal, Consumer Reports, and Australia’s Bond University, the conference raised many points that are rarely discussed.

Here are some of my favorite quotes:

“Risk factors have been turned into diseases.” Dr. Steve Woloshin discussed the absurdity of labeling us all with a “pre-disease”: doesn’t everyone all have some version of pre-hypertension, pre-diabetes, or even pre-death? More insidious is the promulgation of testing people who have no symptoms, despite of evidence of harm. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for more testing and more care.

“Diseases are being created for the purpose of selling medications.” Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of a Parkinson’s disease medication that was about to go off patent. Roy Moynihan showed his class spoof video of a new and dangerous epidemic.

“Ordinary experience is medicalized.” Dr. Allen Frances, a psychiatrist and Chair of the DSM4 task force, rails against the psychiatric profession for labeling people with diseases they don’t have. If you are grieving two weeks after the death of a spouse, you have depressive disorder; if your child is inquisitive and energetic, he has attention deficit disorder. Of course, watchful waiting is never the solution, but fortunately, there is a new and expensive medication for this disease.

“Language corrupts thought.” A diagnosis of “carcinoma-in-situ” brings up scary connotations and fuels the desire for aggressive treatment. However, our technologies have gotten so advanced that we are detecting many early cancers that, if left alone, may never grow or harm the patient. The National Cancer Institute recently proposed a change in terminology for cancer, and other conference speakers proposed other disease definitions that should be changed.

“We are practicing faith-based medicine that ignores the harms and exaggerates the benefits.” It is well-documented that medical journals bias in favor of positive results, and that there are many financial interests to promote the newest, latest medication or treatment. Stories abound about people who survived because of early detection of disease and new, experimental treatment. However, there are also many stories of people who experience serious side effects and fatalities from overdiagnosis and overtreatment. These counternarratives need to be told, and evidence for harm needs to be published.

“Overdiagnosis is a symptom of the same problem that drives underdiagnosis and misdiagnosis.” In the discussion of overdiagnosis, it’s important not to forget that there are other pressing issues too, including medical error and lack of access to healthcare. The medical industrial complex is at fault here, too, and doctors need to assume our social responsibility and moral imperative to do what’s best for our patients.

“More care isn’t better care; it’s just more care.” In the words of my hero, cardiologist and Nobel Peace Prize winner Dr. Bernard Lown: “Overtreatment harms patients, thereby negating the first principle of doctoring, primum non nocere.” Our goal in medicine should be to do “as much as possible for the patient, as little as possible to the patient.”

There will be many challenges ahead for conference attendees, including the difficulty of framing and discussing the problems of overdiagnosis and overtreatment. Much of this conversation will continue at the Lown Institute's Right Care Alliance conference in December. My next few blog articles will address these difficulties. Stay tuned, and please feel free to contribute your thoughts below!

"Don’t Just Do Something, Stand There!"

My last blog post discussed why medicine is so intolerant of uncertainty and inaction, and how this has resulted in a culture of overtesting and overtreatment.

All of us as patients and doctors are at fault for feeding into this system of waste and harm. However, there are some active voices of resistance. Here are some examples:

Dr. Jerome Groopman, internist and author of the excellent book, How Doctors Think, writes about how he teaches medical students to “don’t just do something—stand there.” Very few situations in medicine require immediate action. It may be uncomfortable to apply the tincture of time as a treatment, and many doctors find it easier to order a test than to discuss the pros and cons of the test with a patient.

However, we need to remember our first principle, primum non nocere: first do no harm. Dr. Abraham Verghese writes about the importance of restraint and self-awareness in his novel, Cutting For Stone. Here is the protagonist, a doctor himself, speaking about his father:

My father, for whose skills as a surgeon I have the deepest respect, says, "The operation with the best outcome is the one you decide not to do." Knowing when not to operate, knowing when I am in over my head, knowing when to call for the assistance of a surgeon of my father's caliber--that kind of talent, that kind of "brilliance," goes unheralded.

Doctors: think carefully. Engage in thoughtful discussion with your patient, and decide together what’s best for him. Remember that no testing and no treatment may be the best course of action.

If you have to do something, consider a novel treatment that Dr. Aaron Stupple coins “a listening infusion.” During his internship, Dr. Stupple faced resistance when he questioned his supervisors on the necessity of costly tests and invasive treatments. As the most junior person on the team, he couldn’t override their decisions, but he could add his own treatment. He made it a routine to visit patients and talk to them, often staying hours after everyone else to finish his “listening infusion”. He didn’t obtain more test results, but somehow he knew more about his patients than anyone else. He didn’t give them a pill, but somehow his patients felt better at the end of the day.

This is what doctoring should be about. A recent study of resident doctors found that only 12% of their time was spent interacting with patients, versus 40% interacting with the computer. The doctor may find everything about a person’s laboratory tests, but nothing about her family or values. “Personalized medicine” and “patient-centered care” are hot buzzwords, but it’s not just about finding someone’s DNA and redoing the waiting room area. Improving medical care must begin with personalizing care to the patient and listening to her story.

We must bring back the art of medicine and the art of healing, and treat all of our patients with a “listening infusion”. Then, “don’t just do something—stand there”! Changing any deeply-entrenched culture is hard, but it can happen: one doctor at a time, one patient at a time.

When More Isn’t Better

It was the beginning of my third year of medical school. I had just started my first clinical rotation. My very first patient was Ray, a middle-aged man with pancreatitis.

I presented his case to the team. “What are Ranson’s criteria?” the attending physician asked.

My mind went blank. “Uh, I’m not sure,” I said.

“Next time, you’d better be sure,” the attending said. He turned to my colleague, who promptly gave the correct answer.

On that first day of medical training, I learned that “I don’t know” is not an acceptable answer. If you don’t know, look it up. Make it up you have to. Whatever you do, never admit that you don’t know.

Not surprisingly, doctors end up not tolerating uncertainty. In our high-tech era, this means more is done. A patient has seemingly vague symptoms, so the doctor orders some laboratory tests “just to get a baseline”. A doctor doesn’t know what’s causing the headache, so she orders a CT or MRI “just to see”. Medical students are rewarded for pursuing obscure diagnoses, so they order increasingly esoteric tests “just in case”.

This insidious practice has resulted in a culture of overtesting and overtreatment. Studies show that 30% of all medical care—at the tune of $700 million per year—is waste. Not only does this impose a heavy financial burden on society and on patients, it also results in avoidable harm. Every test has risks and potential side effects. A CT scan has a risk of radiation, for example, that may lead to cancer later in life. And one test often leads to another, even riskier, test.

Recently, my husband had an itchy rash on his arms. He mentioned this to a dermatologist friend, who recommended that he come into the office for a skin biopsy. I asked how the biopsy would change my husband’s management: regardless of what it showed, wouldn't he still use a steroid cream? Sure, the dermatologist said, but at least we’d have more information.

Nothing against our well-intentioned friend, but this is a case where more information isn’t better. Why get a biopsy—an invasive procedure with risks including bleeding and infection—when it wouldn’t change the management or the outcome? Yet, tests are done all the time to quench the insatiable curiosity inherent in medicine: we just have to know.

Here’s another common scenario. A young woman comes in with abdominal pain. She’s able to eat and drink and looks well, but has a pain in her belly that’s bothering her. Many doctors would order a CT scan of her abdomen to make sure there’s not something bad going on. But what is this bad thing—how likely is it? How does the patient feel about the risks of the test, versus the risks of watchful waiting? If she’s fine waiting, then why expose this young person to unnecessary radiation, when it would be just as reasonable to wait to see if she gets better the next day?

More tests and better technologies are not the solution to improving clinical care. In fact, we know that 80% of diagnoses can be made without any tests at all, but by carefully listening to the patient’s story. I’m an emergency physician, yet even in the emergency setting, it is rare that a patient requires one particular test, and that test must be done right now.

Here’s what to do instead. Doctors: talk to your patients. If you’re not sure, tell them. Patients prefer honesty to false reassurance. Instead of reflexively ordering a test, discuss the benefit of the tincture of time. Remember that our first principle is to “Do no harm”. I just met two doctors, Tanner Caverly and Brandon Combs, who started an educational initiative to encourage doctors-in-training to write vignettes of medical overuse. To them, and to a growing number of physicians including the Lown Institute’s Right Care Alliance (of which I'm a proud member), preventing overuse is an ethical imperative.

Patients: insist on being an equal and active partner in your care. Ask “why” and “how”. Why is this test ordered? How will this test change my management? Make sure you know your diagnosis. Assure your doctor that it’s OK if she is not 100% sure; you don’t demand certainty, but you do expect transparency.

It’s taken me nearly ten years to unlearn the bravado I acquired in medical training and to learn that uncertainty isn’t bad; more isn’t always better; and less can be more. As the great cardiologist and humanist Dr. Bernard Lown says, you should always feel better after having gone to your doctor. We need to focus on healing by teaching and practicing the art of listening, compassion, and kindness.