Topol likes to open his chapters with quotations. My favorite from this chapter is by Wired Magazine’s Patron Saint, Marshall McLuhan:
Let’s face facts, any book that starts by talking about a seinfeld episode is alright with me.
Topol uses Elaine's problem to demonstrate that often, the health care system is built and organized with patients on the outside. Elaine's lack of access to her medical record is played for laughs but this can result in commissions and errors to dot the medical record of some patients. Our medical record system was designed in an era when medicine was way less complex and often less cooperative. Today, "patients are typically unable to see, let alone keep or contribute to their office visit notes about their condition and their body that they paid for."
He then lays out three fundamental forces that are forcing the old hierarchy of medicine to break up. The first force is the rise of consumer facing medical technology. He envisions a medical future where Elaine wouldn't go to a doctor, but use a smartphone and app to evaluate her mole. A computer algorithm entirely bypasses any need to see a doctor at all. This vision is not just a minor rejiggering of the pieces on the board, Topol is flipping the entire Monopoly game off the table and going to play Mine Craft.
Topol concedes that medicine will always be different than other digitally empowered parts of our lives, but that doesn't mean it is immune to the forces of information and individualization that are reshaping society.
The change in the relationship between doctor and patient begins with access to data. And we are taking our first steps into world where patients are generatIng their own medical data. The physician is now dependent on the patient sharing her data rather than the other way around.
“The first time I had an ECG e-mailed to me by a patient with the subject line “I’m in atrial fib, now what do I do?,” I knew the world had changed.”
The shock was not just that the patient had the tool to measure an ECG, but that the same tool also interpreted the data to give the correct diabnosis. The same cost curve that put a supercomputer in everybody’s pocket is now shrinking and democratizing the tools of medicine. Pulse oximetry, echocardiogram a, ECG, glucometers, blood pressure cuffs are all becoming more available and easier to use.
These are the tools necessary for the power shift, the next requirement are patients to use these technologies. He calls them Smart Patients, analogous to smart phones.
“Patients are intrinsically remarkably smart—they know their own bodies and the context of their lives—and no one has a bigger interest in their own health.
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He highlights three incredible examples of Smart Patients. The first is Janet Erdman a women with an incredibly rare disease that she diagnosed with the help of Google. She is an accomplished geneticist so maybe not the best example of a citizen doctor.
The next one is Elena Simon who was diagnosed and cured of fibrolamellar hepatocellular carcinoma. This cancer affects about 200 people a year. Elena then went into the lab and sequenced the genome of her own cancer and 14 other cases. She discovered the key gene responsible for this cancer.
The other Simon on the paper, the senior author, that's her father.
The last story is about a couple of fathers who used social media to bring together a cohort of a rare disease that led to a breakthrough in the understanding of the disease. The dads wrote an editorial begging scientists to listen to parents and leading to one of the critical lines of the book:
““the single most unused person in health care” is the patient.”
This leads into the third ingredient in this healthcare revolution: hyperconnected. Topol points out that all three Smart Patients benefitted from social media that allowed people to communicate and collaborate. He points out the incredible growth of Facebook, but he emphasizes that hyperconnected means more than just persons connecting with persons, but also machines connected to machines, and people to machines. He sees the Internet of Things being part of the hyperconnected world and one of the factors that will completely rewrite the doctor-patient relationship.
Topol concludes that these forces will not just empower patients but will emancipate them from the shackles of paternalistic medicine. The remainder of the chapter sets the table for the upcoming chapters where Topol will describes the steps and pitfalls on the way to this destination. One absolutely gets the sense that Topol is, personally, a huge proponent of this emancipation, but what makes the chapter so powerful was the way he made the whole process seem inevitable.