A few weeks ago, @drmikesevilla (Mike Sevilla) live tweeted a slide from Eric Topol’s (@EricTopol) talk at the American Academy of Physicians’ 2014 annual meeting. The slide, a picture of a young man with transparent numbers and data points outlining his face, is silhouetted by words in bold black print: YOU ARE YOUR DATA. This sentiment was a throwback to Dave deBronkart’s (e-Patient Dave’s) 2009 keynote address for the Medicine 2.0 Congress in Toronto titled “Gimme my damn data, because you guys can’t be trusted.”
The idea is that a person’s ability to understand and control their medical records, previous lab results, and even biometric data will lead to more engaged patients and better outcomes. While enticing to blindly follow this logic, there remains a fallacy to such arguments.
Jerome Groopman explains succinctly in his groundbreaking book, How Doctor’s Think. On page 1, he introduces Anne Dodge, a patient who had been suffering and misdiagnosed for over 15 years. When she goes to see gastroenterologist Myron Falchuck, she eventually is found to have celiac disease. When questioning Falchuck about how he made the diagnosis that so many others missed, Groopman learns something important. He writes:
Falchuck ushered Anne Dodge into his office, his hand on her elbow, lightly guiding her to the chair that faces his desk. She looked at a stack of papers some six inches high. It was the dossier she had seen on the desks of her endocrinologist, hematologist, infectious disease physicians, psychiatrists and nutritionists. For fifteen years she’d watched it grow from visit to visit.
But then Dr. Falchuck did something that caught Anne’s eye; he moved those records to the far side of his desk, withdrew a pen from the breast pocket of his white coat, and took a clean tablet of lined paper from his drawer.
Falchuck and Groopman point to the fact that master clinicians approach diagnosis in a structured and Bayesian manner. As medical students, we learn to appraise our patients in a logical order. First, a history and physical is performed. Next, hypotheses are generated and weighed carefully based on the knowledge gained. Then, and only then, are labs ordered and specialists consulted. We use testing to confirm or refute, but not to generate new diagnoses.
In other words, the so-called data that are oft sited as the key to patient engagement are actually the last and weakest links in the evidentiary chain. Patient data only have meaning when viewed in the context of a detailed history and physical.
You are not your data. You are a complex human being with a unique story and set of symptoms. And I would argue that the key to being diagnosed and treated correctly is having your story told and listened to, contemplated, and digested.
Your data will not set you free, but your story just might.