“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!