Here we are discussing the prostate cancer screening guidelines, but what bothers me is that the patient is brought in as a footnote at the end of the analysis. I find it really dispiriting that there is so much lip service to “patient-centered” medical homes, outcomes research, and more, yet the patients are on the periphery of the discussion. Heck, we are an industry now, except it is all from the outside looking in!
Maybe, before academics, policy wonks, and patient engagement companies hole up and review the evidence on important issues affecting you and me, they ought to open the general topic for public commenting and questioning that is out there for everyone to see.
I know what you are thinking –and of course, it has occurred to me too: I am talking chaos. Well, perhaps…but…maybe we must do better. What if we had more feedback loops where patients and the public enter into real-time discussions at the front end, when priorities are being set, where care is being given?
In some parts of the world, medical technology assessment discussions bring patients in from the start before decisions are made on whether or not to cover specific items. What about webcasts available on demand where the logic of evidence reviews is easy to find? What about more Q&As bringing patients in? Maybe the questions asked would shift if patients participated as real partners. Maybe the answers would be more understandable.
We need more of this in the US. Without it, we perpetuate distrust, anger, and a mockery of the science.