What life looks like without effectiveness research

Via healthcare economist, a gooznews post on why patient advocacy groups are unlikely to promote comparative effectiveness research even though such concerns are of central interest to patients.

Compare the crying need that gooz describes with the mission of PCORI as described by its Chief Operating Officer:

Q: Can you give an example of how you envision people using the kind of research that PCORI will fund?

A: Let’s say someone is trying to decide if they should have Procedure A versus Procedure B. You give them all this information, but what the patient is saying is, "Well, what’s really important for me is that I’m very afraid of pain. What procedure is going to be the lowest pain option that still gives me the benefits that I need?" Somebody else is going to be very interested in what will give them the longest life. Somebody else may say, "Well, what’s really important to me is whatever procedures I have, I am a working parent and I can’t really afford a lot of time off from work, so what procedure is really going to take care of this condition, but get me back to work as quickly as I can?"

So, then we [at PCORI] are trying to think of the different options that are available to us, not only looking at research that says, "If you do this cardiac procedure versus this cardiac procedure, here's what the outcome is." But now: here’s what the outcome is in terms of pain, here’s what the outcome is in terms of days off from work, here’s what the outcome is in terms of longevity. So then you, as the patient, have the information to make that comparison and make really a tailored decision that meets your needs.

There are a lot of problems in health care, but it isn't like we can't solve them.  We just have to learn how to ignore yahoos who get in the way.