Outcomes Research May Actually Work — Especially If It’s Private
The Cystic Fibrosis Foundation, in Bethesda, Md., manages the electronic registry, which tracks treatments, results and health status on patients from more than 100 centers around the country. Researchers say that by identifying the most effective treatments for each patient, it has played a crucial part in doubling the average life expectancy of the estimated 30,000 cystic fibrosis patients in the United States.
Now the idea is being widely copied. Advocates for patients with an array of intractable diseases like Parkinson’s, lupus and juvenile diabetes are among the latest to begin developing registries, and the National Institutes of Health is promoting a linked network of registries for rare diseases with fewer than 200,000 patients.
Full report on the electronic patient registry.
Agree that private, bottom up information systems like these are probably useful. Top down, government initiated systems are probably not.
Okay. Let’s make an exception to the general rule that outcomes research doesn’t do much of anything very good.
Wow, using science to drive medical practice decisions. And its using that evil federal government NIH. What do those Ph.D.s and M. D.s know. Where did my leave my bloodletting cups?
There is nothing wrong with outcomes research. There never has been. In general, information and research is always a good thing. What is bad is misusing rearch to deny people needed health care.
And that, unfortunately, is the threat we face through the nationalization of health care.
I think it’s a good idea.