For the second morning in a row, over at Forbes, Matt Herper is amplifying his reporting-as-advocacy (do go read it all). He none-too-subtly seeks a more open data sharing matrix, between pharma research labs -- via anonymized master vaults -- to avoid the oft'-repeated "blind alley" chases, inherent in the current non-system. The argument is quite persuasive that the current non-system does a disservice to patient-outcomes:
. . . .Gary Gilliland, the head of cancer research at Merck, did some of his important work on blood malignancies called myeloproliferative disorders with the help of the MPD Foundation, which insisted researchers share data. . . .
[Another recent Ex-Merck executive] Stephen Friend, whose nonprofit organized the the Sage Congress [click through to Mr. Herper's article to see the presentations], says the push toward making data more widely available is being driven by patients. He also thinks this kind of approach, epitomized by the Web site PatientsLikeMe, could transform the way side effects are tracked. It would be a lot easier to understand what goes wrong with a drug if people who take it were pooling and sharing their data. "I think the physician as the priest who knows things that others don't know has got to go away," he says. . . .
Indeed -- good stuff. I linked his installment of yesterday, here.
2 comments:
I agree. I worked on a drug that killed children in an absolutely horrific manner. In addition it was slow and incredibly painful and it wasn't due to the specific drug but rather the underlying mechanism.
15 years later I came across a company that was doing the exact same thing, and 5 years after that I was still seeing people proposing using the same mechanism and trying to raise capital.
However, in addition to what's locked away in academic labs, much much more is locked away in pharmaceutical companies. This is because it's considered confidential commercial information. For you don't want your competition to save money by not going down the same dead end.
In meetings with FDA sometimes you can get hints from things that FDA proposes that they've seen certain things with other drugs in the class and they're trying to push you to think about or monitor for them. In fact sometimes companies openly ask FDA for guidance based on what they have seen with other drugs. You can get this even when there are no marketed drugs of the class yet you know other companies have worked in the aread. It would be much nicer if when things are safety issues that have been seen with other drugs that FDA could actually say something. I'm sure companies would like to get at lack of efficacy info but I doubt they would want their data shared.
Salmon
Thanks, Salmon --
I do wonder whether a federal government agency could safely, and effectively, serve this anonymized "knowledge base" function -- and formally provide summaries to requesting companies, in specified fields of endeavor.
What od you think, Salmon -- if set up with strong insulation, from other agencies' prying eyes?
Or is this a pipe-dream?
Namaste
Post a Comment