Prolific, unsinkable Maggie Mahar commented today on the Century Foundation’s HealthBeat blog about Paul Levy’s “Yes, Patients Can Help Their Doctors” introduction to my forthcoming book. Among other things she pointed out, correctly, that not everyone wants to be as engaged a patient as I was (am). My response touched on several things we frequently write about here, as participatory medicine emerges into the daylight.
“For the record, I agree with everything you say, especially that it comes down to being true to oneself. IMO, empowerment is not about being uppity, it’s about being free to speak up and play as active a role as you want, to be as engaged as you want.
“My mom’s 100% empowered and engaged. Her husband was the polar opposite: “I don’t think we should be asking the doctors all these questions.” My good friend Monique Doyle Spencer, multi-time cancer kicker, considers herself not an e-patient (and explained why); meanwhile her husband (not her physician) found an effective treatment for Hand-Foot Syndrome (a nasty burning side effect) online. And Monique posted it online for others to discover. Her little blog now shows up in the first page of Google results for “Xeloda side effects.”
“My view is that this is a new dance, because a major new factor has arrived on the scene: information that was previously available only inside the fortress can now be found lying on the ground outside the castle walls. That doesn’t make everyone a genius – to the contrary, it raises questions of how to make good use of it. Not everyone wants to, as you say. And not every physician wants to “dance” that way. But for those who want it, a new world is possible.
“My own physician, Danny Sands, says in his speeches, “Embrace knowledge symmetry.” Not absolute symmetry – just the idea that it’s *possible*. The useful question is, how do we adjust our flaps to recognize the shift in the wind?”