In thinking about the role of patient advocacy, I'd like to return to Anne Dodge, the woman told she was anorexic for 15 years until her 31st doctor realized she in fact had celiac disease. Interestingly, this error is not new. A few years earlier, the identical misdiagnosis was made in my close relative. That brings to mind a Possible Research Idea: I'd love to see what percentage of women told they are anorexic actually have celiac disease (the blood tests for the condition are relatively cheap).
I bring this up because we're discussing an ancient problem: How do we ensure that the medical system collectively learns from past experience? It's a shame that Anne Dodge experienced the same mistake as my relative did earlier. Thus far, we've taken opposing viewpoints of this failure: You might argue that we should be suspicious of too many algorithms and continue to "teach doctors how to think about their thinking." I'd argue that we've already tried that for decades. Instead, this mistake could be eliminated if all doctors considering the diagnosis of anorexia henceforth did certain blood tests—such as the one that tests for celiac disease.
Still, these approaches both center fundamentally on changing the behavior of doctors and neglect the participation of patients. Little that we've mentioned helps empower people like Anne Dodge to seek out better care (except for getting a second opinion, which she did dozens of times before luckily finding a doctor who could deliver the right results). With increasing transparency in medical practice and the widespread use of Internet resources, we have an unprecedented opportunity to involve patients and educate them about health care.
Despite this wealth of information, though, consider how even doctors choose their doctors. When my wife looked for an obstetrician in Boston, I didn't interview possible candidates or really explore who was the best thinker. Instead, we asked a couple who live nearby (a teacher and an architect) who they went to for their son's recent birth. When you needed a hand surgeon, you first selected somebody "well-known in the Boston medical community" because he treated many professional athletes. When that guy turned out to be a dud, you later chose a doctor listed in the city's magazine issue about "The Best Doctors." Neither of us behaved very scientifically.
The reason is that being scientific requires robust data—but measuring which doctors "think" best is really hard. And so we all resort to a messy mix of rumor, reputation, academic pedigree, and other unreliable indicators of a doctor's competence. Thus I wonder whether How Doctors Think challenges the mold of "The Best Doctors"-style magazine articles. We're given a collection of flattering anecdotes about already famous doctors like JudyAnn Bigby, now the Massachusetts health secretary, and James Lock, the physician-in-chief of Children's Hospital Boston—fascinating, to be sure. But we're not left with a clear strategy for empowering patients to find these kinds of doctors in the first place. Or, for that matter, a clear strategy for researching whether their reputations are well-deserved.
This ultimately returns to our disagreement about standardizing medical care. You feel it often constricts good medical practice; I think we don't have enough of it. This divergence may color our views of patient advocacy. I believe that measuring physician and hospital performance on well-designed standard scales and making this information publicly available (whether online or otherwise) is the highest yield manner of empowering patients to demand better health care. Rather than worrying about doctors' thinking per se, then, we should simply assess doctors' results.
More and more of that data are being collected. Today, for example, almost every child diagnosed with cancer in the United States registers with the Children's Oncology Group worldwide cooperative, which records, studies, and shares almost every aspect of their care. As a result, cancer treatment nationwide proceeds in lockstep, and innovations are available quickly to every child. Similarly, for almost 50 years, the Cystic Fibrosis Foundation has tracked the performance of numerous hospitals nationwide in caring for people with that genetic condition—and through its policy of openness, galvanized many families to seek out better care. For newborns, the Vermont-Oxford Network tracks the outcomes of preterm infants in dozens of neonatal intensive care units (though they have not yet opened up their database to the general public).
Many states now also track individual doctors. Recently, Massachusetts released a list of cardiac-surgeon-specific mortality—incredibly, by name—allowing consumers to see how their surgeons fared. (Now you don't have to ask your neighbor about his heart surgeon; you can just log on and pick the one whose patients survive best.) And while individual physician report cards still are fairly primitive, your chapter about X-rays ("The Eye of the Beholder") made me think of a simple way for patients to tell how good their radiologists are: Create a standardized test for them, and post their results publicly (and possibly also link their salary to their scores).
There's a tendency to treat medicine like an arcane art best performed in secluded enclaves. As a result, health care has been shielded from the kinds of process and consumer-focused quality improvements that have become common in many industries. Companies like Starbucks and Blockbuster employ "secret shoppers" who assess franchises for quality, based on certain standards; I'd like to see major insurers and Medicare do the same with standardized "secret patients" who'd drop in periodically to doctor's offices. How well do doctors treat, say, diabetes, hypertension, or solve standardized diagnostic puzzles (like a seemingly anorexic patient who actually has celiac disease)? Insurers should find out—and further, share the results with patients.
Like all people, physicians respond to incentives. As you mention, "cognitive medicine" is not paid well, while procedures like colonoscopies or cardiac catheterizations are lavishly compensated. (That's also why cardiac surgeons drive nicer cars than pediatricians.) Of course that's not fair—but that's because there's no easy way to measure the amount of cognition expended at a typical visit. That's why focusing on the ends (that is, health outcomes) and not the means (that is, thinking) is necessary.
I've come to believe that elevating health-care quality hinges principally on greater standardization, transparency, and accountability, which I suspect may differ from your analysis. I'd be curious to know what you think are the best ways to motivate physicians to perform better, and also how best to empower patients to seek out good versus bad medical care.