That’s what I expected when I discovered in 2007 that I was nearly dead from kidney cancer, and I did in fact get the best. I’m grateful, and I’m alive today because of it. But I later learned that most kidney cancer patients never even hear about the treatment I got, which, at the time, was the only drug that ever had a chance of stopping the disease. At first I was appalled, but when I discovered the e-patient movement and read “Doc Tom” Ferguson’s amazing paper “e-Patients: How They Can Help Us Heal Healthcare,” I realized there’s way too much information for anyone to know everything. Worse, not only are docs unable to know everything useful, most don’t even realize it’s true. In fact, many say they’ve been trained to act confident, for the patient’s benefit. I learned, too, that a strong patient community can often know the latest about a disease – because they have only that one condition to worry about, while doctors have 11,000 different condition codes.
The cause I’ve taken on is patient engagement and its close cousin, participatory medicine. You can google to learn more, but it boils down to this simple idea: Let patients help heal healthcare. Patients must realize they really can be active contributors, and clinicians should realize they’re not supposed to know everything, and they should let patients help, medicine can only improve. All of PVI’s advocates have stories that express this in one way or another. The trick, of course, is to find ways to express this that don’t seem threatening, but instead inspire change. This work – developing patient voices to be effective and polished – is the work of PVI.