5 ms·

I just listened to the book Bad Pharma, by Ben Goldacre, which deals with this problem. The author works as a doctor and so has a bit of an inside view of how

by Expez 7y ago

I just listened to the book Bad Pharma, by Ben Goldacre, which deals with this problem. The author works as a doctor and so has a bit of an inside view of how the industry does 'science' and how this affects doctors and patients. The lack of published negative results isn't a problem unique to pharma but the drive for profits and the actual life and death outcomes makes it particular severe in this area of science, I think. I highly recommend the book, it was both hilarious and terrifying.

Angostura 7y ago
Don’t forget to support Ben’s campaign to change this. https://www.alltrials.net/ https://www.alltrials.net/
ekianjo 7y ago
There is also an opportunity for public databases of patient outcomes (post marketing) that we would all greatly benefit from. A lot of that data is still discussed behind closed doors and authorities are also to blame because it is their prerogative to force data to be open if they wish to.
- pintxo 7y ago
  We are working on it, but financing seems to be tricky for such an endeavor.
- jcims 7y ago
  Sounds like a FUD magnet but I agree there would be major upside. Edit: To clarify, publishing individual patient outcomes publicly could pretty easily be spun as a privacy risk to trial participants and/or have a chilling effect on enrollment. I’m personally invested in seeing something like this happen but if not approached defensively it could be vulnerable to getting shot down and made an example of.
sanxiyn 7y ago
I must note that according to the linked article, "pharma’s record has been markedly better than that of academia and the federal government". It's academia that is not reporting results, not industry.
- hannob 7y ago
  That's an illogical conclusion. Both don't always report results. Academia is worse. That doesn't make the industry good in any way.
  - Amygaz 7y ago
    I don’t know what problem that would solve. Academia rarely does trials that end up killing people. Unlike the whole CAR-T cell therapy. Companies like Juno killed almost 50% of their patient, before the FDA halted their trial, which was allowed to resume later, and kill more people. Granted they where going to die anyway. Still the like of Hans Bishop who us held as a hero in the industry because he sold his company for billions, while the product will never be approved. Even if were to be, it would sit on a shelf because it’s too expensive. So much for transparency... (Edited some typos)
    - sanxiyn 7y ago
      > while the product will never be approved I must point out that some CAR-T cell therapy is already approved. I am not sure about Juno's particular candidate, but it isn't obviously insane that it was sold for billions.
    - jcims 7y ago
      I’m standing right now near the window on the 20th floor of a cancer center, typing this on my phone while my wife sleeps 10 feet from me. This is high stakes medicine, yet the current environment has the docs on this floor terrified of doing anything that isn’t in the standard of care runbook. My wife has had elevated blood glucose levels for six months, which is not good when you’re fighting cancer, yet i can’t get anyone to treat it because there’s no clinical evidence that managing glucose levels for her specific type of cancer has any benefit. Guess what. Nobody’s doing that trial any time soon. Meanwhile there are thousands of diabetics managing their blood glucose while fighting cancer and there is endless material available demonstrating that cancer cells thrive in hyperglycemic environments. So, i don’t know anything about Juno, they could be sociopaths. But i have no issues with high risk attempts as long as the patients are informed and there are ethical standards for transparency. At least they are trying.
rjmunro 7y ago
The article states "based on data collected from the TrialsTracker website of the University of Oxford", which is Ben Goldacre's project.
avip 7y ago
I'd also recommend his TED talks which are really amusing and educating. https://www.ted.com/talks/ben_goldacre_battling_bad_science https://www.ted.com/talks/ben_goldacre_battling_bad_science https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe?language=en https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_kn...

by Expez 7y ago

Angostura 7y ago

Don’t forget to support Ben’s campaign to change this. https://www.alltrials.net/ https://www.alltrials.net/

ekianjo 7y ago

There is also an opportunity for public databases of patient outcomes (post marketing) that we would all greatly benefit from. A lot of that data is still discussed behind closed doors and authorities are also to blame because it is their prerogative to force data to be open if they wish to.

pintxo 7y ago
We are working on it, but financing seems to be tricky for such an endeavor.
jcims 7y ago
Sounds like a FUD magnet but I agree there would be major upside. Edit: To clarify, publishing individual patient outcomes publicly could pretty easily be spun as a privacy risk to trial participants and/or have a chilling effect on enrollment. I’m personally invested in seeing something like this happen but if not approached defensively it could be vulnerable to getting shot down and made an example of.

sanxiyn 7y ago

I must note that according to the linked article, "pharma’s record has been markedly better than that of academia and the federal government". It's academia that is not reporting results, not industry.

hannob 7y ago
That's an illogical conclusion. Both don't always report results. Academia is worse. That doesn't make the industry good in any way.
- Amygaz 7y ago
  I don’t know what problem that would solve. Academia rarely does trials that end up killing people. Unlike the whole CAR-T cell therapy. Companies like Juno killed almost 50% of their patient, before the FDA halted their trial, which was allowed to resume later, and kill more people. Granted they where going to die anyway. Still the like of Hans Bishop who us held as a hero in the industry because he sold his company for billions, while the product will never be approved. Even if were to be, it would sit on a shelf because it’s too expensive. So much for transparency... (Edited some typos)
  - sanxiyn 7y ago
    > while the product will never be approved I must point out that some CAR-T cell therapy is already approved. I am not sure about Juno's particular candidate, but it isn't obviously insane that it was sold for billions.
  - jcims 7y ago
    I’m standing right now near the window on the 20th floor of a cancer center, typing this on my phone while my wife sleeps 10 feet from me. This is high stakes medicine, yet the current environment has the docs on this floor terrified of doing anything that isn’t in the standard of care runbook. My wife has had elevated blood glucose levels for six months, which is not good when you’re fighting cancer, yet i can’t get anyone to treat it because there’s no clinical evidence that managing glucose levels for her specific type of cancer has any benefit. Guess what. Nobody’s doing that trial any time soon. Meanwhile there are thousands of diabetics managing their blood glucose while fighting cancer and there is endless material available demonstrating that cancer cells thrive in hyperglycemic environments. So, i don’t know anything about Juno, they could be sociopaths. But i have no issues with high risk attempts as long as the patients are informed and there are ethical standards for transparency. At least they are trying.

rjmunro 7y ago

The article states "based on data collected from the TrialsTracker website of the University of Oxford", which is Ben Goldacre's project.

avip 7y ago

I'd also recommend his TED talks which are really amusing and educating. https://www.ted.com/talks/ben_goldacre_battling_bad_science https://www.ted.com/talks/ben_goldacre_battling_bad_science https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe?language=en https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_kn...