The Patient Equation

Introduction

About a decade ago, I met Jack Whelan. An investment researcher working in the world of finance, Jack power-walked from the train to his office every day for years…until he noticed that walk getting more and more difficult, along with occasional nosebleeds that prompted him to see his doctor. He was diagnosed with a rare blood cancer—Waldenstrom macroglobulinemia (WM)—and his world changed completely. WM was (and is) incurable, with no FDA-approved treatments and an expected survival of just five to seven years. Wanting to extend his life, Jack sought out clinical trial after clinical trial. The first three trials failed, and then his fourth finally got him on a drug that stopped the cancer's progression for years.

Throughout his experience, Jack became an expert—and, more important for our story here, a tracker. Jack demanded weekly blood tests and charted a range of biomarkers—hematocrit, immunoglobulin, and others—hoping to find answers in the numbers, to be able to know if he was responding to treatment even before the doctors did. From physician to physician, from trial to trial, he brought these numbers with him in Excel spreadsheets. He hoped this growing collection of data about his body would uncover new and valuable information that could keep him alive.

Jack's diligence and initiative is rare, but he's not alone. Ray Finucane, a 75-year-old mechanical engineer with Parkinson's disease, built an app to track his symptoms and to try to optimize the dosing ...