Revolt

I start this introduction by citing George Orwell’s essay “Why I Write,” published in 1946. It and his four reasons to write can be read in full here.

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CRUELTY

Victor Mulanovich studied the behavior of teaching rounds at our hospital in Lima for his Bachelor of Medicine thesis completed in 1989. His was one of the first theses about the patient-clinician interaction and set the stage for my own thesis on making decisions at the end of life. Dr. Mulanovich’s thesis can be found here.

While I was writing this book, Elisabeth Rosenthal published an essential book, An American Sickness: How Healthcare Became Big Business and How You Can Take It Back, about the role of costs and charges in American healthcare. It can be found here

An example of a company that pushed prices of generic off-patent drugs is Lannett Company. Their story was covered by The New York Times here.

The Center for Innovation did the work of uncovering moments of deep human connection in the hospital in 2010. This program evolved from the SPARC innovation program at Mayo Clinic. This program, which I joined in 2004, gave me the opportunity to conduct research on shared decision-making working with two fantastic designers, Maggie Breslin and Matt Maleska. Almost 15 years later, they helped form the Patient Revolution organization. A good article about SPARC was published in Fast Company and can be read here.

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BLUR

In 2013, Susannah Fox called attention to the error in attribution of the “one jumbo jet per day” analogy to the Institute of Medicine report “To Err is Human” about medical errors in hospitals. This analogy is often used when citing the report’s statistics that place medical errors as a leading cause of death in America. Her note about this “sticky”extrapolation is here.

My colleague wrote a helpful account of the Chinese healthcare system in the context of patient-centered care. My Peruvian colleagues wrote a similar account.

There are two research lines that could be reviewed to understand the effect of context on the development of chronic conditions. One has to do with the effect of stress on the body’s ability to adapt and thrive, a process sometimes called allostasis. At some point the stress is too intense for too long for the body to adapt in health, and so it becomes ill. As the body can become ill in many ways, it is common for certain contexts and certain conditions to go together. The field of medicine that studies such clusters is called syndemics.

The American College of Physicians has put forth some initiatives to free up clinicians’ attention and time so that they respond kindly to patients. Christine Sinsky, a leader in this field, summarizes their position here.

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GREED

One version of the foundational story of Mayo Clinic can be read here.

A very good discussion of the role of advertising and the logic of consumer choice rather than patient care is in Annemarie Mol’s book The Logic of Care: Health and the Problem of Patient Choice.

There is substantial evidence of association between receiving gifts and payments from pharmaceutical companies and prescribing patterns of physicians, with reports from investigative journalists and clinical care researchers.

The best evidence on supply-induced demand comes from the Dartmouth Atlas project. A book by its founder, John Wennberg, describes this project and its main contributions to the field of small-area variation.

This article offers an excellent analysis of why drugs are so expensive in the U.S.

The tree analogy is in Richard Dawkins’ book The Greatest Show on Earth: The Evidence for Evolution.

My colleague Thom Rooke wrote an excellent account of the Quest for Cortisone.

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BURDEN

More on the Patient Advisory Group here.

Kasia Lipska’s Op Ed can be found here.

The comments of Lilly’s CEO can be found in this January 2016 story.

The scholarly paper that documented the recycling of clinical notes in electronic medical records through careless overuse of copy-and-paste functions was published in the Journal of the American Medical Association, JAMA Internal Medicine.

I have had a hard time figuring out who originally coined the phrase “the patient is the most underutilized resource in healthcare.” Advocates and executives in the health information technology circle used it the most, with at least one of them, Sara Riggare, indicating it is a phrase from the 70s.

A consensus among diabetes educators predicted that some patients with type 2 diabetes would spend two hours per day on self-care, without accounting for other conditions that may complicate their situation. The same investigators demonstrated that patient time is almost never considered in the study of costs of medical interventions. They also showed that patients who spend more time on self-care were older, sicker, more disabled, not working, and more disadvantaged economically. Our own work shows that patients spend about two hours per day, with significant investments in running administrative errands. A summary of all the available literature made the same estimation.

Our website offers many relevant papers, videos, and blog entries related to minimally disruptive medicine, including a link to the original publication. “We need minimally disruptive medicine” appeared in the BMJ on August 11, 2009.

For many served by the Ryan White HIV/AIDS Program, disparities in viral suppression decreased. Doshi and collaborators reported virologic suppression in 81.5 percent of the 250,000 disadvantaged, uninsured, or underinsured patients cared for in the Ryan White HIV/AIDS Program (RW) by 2014.

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JOHN

A report documents the practice of “cutting ties” between practices and patients who are “noncompliant.”

The picture of the miner can be seen here.

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ELEGANCE

A video analysis of visits demonstrated that too many topics per visit meant limited attention to each one.

A good account of the work to reduce waste in the delivery of care can be found in the book Transforming Health Care: Virginia Mason Medical Center's Pursuit of the Perfect Patient Experience.

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SOLIDARITY

The calculation published in Forbes assumes that the polio vaccine could be patented. Salk indicated in a TV interview that he made the decision not to patent the vaccine, but some suggest that lawyers’ analyses led to the conclusion that the vaccine could not be patented.

An account of the Ebola vaccine can be found here.

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LOVE

Avedis Donabedian, M.D., M.P.H., one of the giants in quality improvement in health care, argued that the secret of quality is love. “Doctors and nurses are stewards of something precious,” Donabedian once said. “Ultimately, the secret of quality is love. You have to love your patient, you have to love your profession, you have to love your God. If you have love, you can then work backward to monitor and improve the system.”

Our group looked at this in 112 randomly selected video-recorded visits. In 40 of these, patients were able to describe their concerns, but physicians interrupted 27 of them after, on average, 11 seconds (range was 3 seconds to 234 seconds). In the 13 encounters in which the clinician did not interrupt, the patient spoke for an average of 6 seconds (range 2 seconds to 108 seconds).

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AMANDA

I use Delta for most of my trips. The chapter “Amanda” was written during one of those trips, by hand, on an unmarked notebook. It is the only chapter of this book that I wrote by hand, nonstop, from takeoff from Minneapolis to touchdown in Washington, D.C. Waiting for the Yellow Line of the Metro outside National Airport, I received a call from a Delta agent. She wondered if I would come back to pick up my notebook. How exactly they figured out it was mine, looked up my phone number, and took the time to call me and then run ― yes, run ― to the TSA security area to hand me, through a security agent, the notebook was remarkable. It moved me. That you can read “Amanda” is thanks to that Delta agent. I did not get her name.

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INTEGRITY

A history of evidence-based medicine can be seen in this video series with pioneers and in “Evidence-Based Medicine and the Search for a Science of Clinical Care” by Jeanne Daly.

More on the Choosing Wisely campaign can be found in its website.

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TIMELESSNESS

The discussion about the role of relationships and resilience in managing complex situations comes from the work on microsystems reported well in “Value by Design: Developing Clinical Microsystems to Achieve Organizational Excellence.”

A study demonstrated that half of the clinical encounter duration was spent feeding the computer directly.

There is a lot to appreciate about the Slow Food movement. An accessible book linking this movement to academia is “Slow Professor”. The “Slow Medicine Manifesto”, also drawing from Slow Food, promotes a measured, respectful, and equitable approach to care.

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CAREFUL

My colleague Rene Rodriguez Gutierrez and I completed a review of all the diabetes trials focused on the effect of controlling blood sugars on diabetes consequences of importance to patients’ duration or quality of life. In people who do not have symptoms, it is hard to see the benefits of lowering blood sugar levels with existing therapies on diabetes complications. The main point of the review is that these results appear to have had no effect in moderating experts’ enthusiasm for these therapies.

The only scientific papers I brought in my suitcase from Peru to start my postgraduate training in the U.S. were the first few of the series of Users’ Guides to the Medical Literature published in the Journal of the American Medical Association. I don’t think I fully understood at the time the importance of this series to my practice or to medicine. These articles have been compiled in an updated book, which is obligatory reading for anyone working with our research group.

Several books have highlighted the challenges that pharmaceutical funding and conduct of research introduce to the practice of medicine, from the classics by Marcia Angell and Jerome Kassirer to more recent accounts by Ben Goldacre and Peter Gotzsche.

The paper “Corruption of the Evidence as Threat and Opportunity for Evidence-Based Medicine” appeared in a journal that I believe stopped publication, yet lives online.

Our work on shared decision-making can be found here. In the period between 2004 and 2017 we evolved in our emphasis. By 2017, we were writing, “The larger need in evidence-informed shared decision-making is for a patient-clinician interaction that offers conversation, not just information, and care, not just choice.”

The video of my presentation “End of EBM” at the University of Wisconsin in Madison is still online here.

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NINETY-TWO

The diabetes medication cards were developed and tested in a clinical trial and found to help patients and clinicians decide which drugs fit their situation better. The tools and a video demonstration are available here.

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CONVERSATIONS

Maggie Breslin, a brilliant designer researcher who worked with me at Mayo at the SPARC Innovation Program and at the Center for Innovation, gave a phenomenal presentation at the center’s TRANSFORM conference in 2009. In each, she described four insights into the value of conversations in healthcare, including a mention of the study her team did about moments of human connection in the hospital mentioned in “Elegance.”

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CATHEDRALS

The prediction that hospitals will eventually become cathedrals of health was published here.

The website of the Sagrada Familia temple describes progress in its construction. As of 2016, it describes completion of 70 percent of the work, with a target date for completion of 2026.

The version of Rodin’s Cathedral that captured my imagination can be seen here.

UNESCO declared the castells as part of the Intangible Cultural Heritage of Humanity. The picture I use comes from an extraordinary series by photographer David Oliete.

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EPILOGUE

For a detailed account of The Patient Revolution and to join our efforts, visit

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