6 ms·

On the one hand, more public data the better! On the other hand, it just sounds like more fodder for uneducated people^ to completely misunderstand what's goin

by SCdF 14y ago

On the one hand, more public data the better! On the other hand, it just sounds like more fodder for uneducated people^ to completely misunderstand what's going on, and all the various failings and pain that comes from that. The last thing we need is pundits and newspapers making wild and broken accusations and 'analysis' based on trying to find the linkbait side to every result. ^Which in the case of clinical trials and papers in general is 99.9% of people, including myself.

MBCook 14y ago
If it means that companies can't run 5 studies, and report only the one that shows the drug works better than a placebo, I'm on board.
carbocation 14y ago
I know this isn't what you mean, but taken to the extreme, this is simply an argument against research. I think that what you mean is that people with an agenda will point to a study with, say, a positive but insignificant effect, and say "well there is a positive effect" when they should actually say "there was no effect". In that case, I agree, but there's simply no avoiding that except through better education and more thoughtful phrasing in articles.
- SCdF 14y ago
  Yeah, I guess what I really mean is that I can understand the want or need for curation of this kind of content. I can also understand that the curation can be done for good (let's not release this cause we screwed up and so the results are pointless and people might get the wrong idea) and for evil (as MBCook[0] said, "let's only release the one study out of 5 that proves the point which makes us the most money"). I typed the parent comment out quickly, and to be honest I'm still digesting my thoughts when it comes to this (I feel that for the most part digestion of these topics is a life constant). [0]http://news.ycombinator.com/item?id=5099379 http://news.ycombinator.com/item?id=5099379
  - rhizome 14y ago
    Curation can still happen, and those curatorial outlets will gain credibility on their own terms. Information is for everybody to use, you're arguing for anti-intellectualism.
DanBC 14y ago
> Which in the case of clinical trials and papers in general is 99.9% of people, including myself. There are some books and websites that help, but it'd be great if there were more. Ben Goldacre - Bad Science Michael Harris - Medical Statistics Made Easy Richard Smith - The Trouble With Medical Journals
- bitcartel 14y ago
  Ben Goldacre has a new book out, Bad Pharma. http://www.guardian.co.uk/books/2012/oct/17/bad-pharma-ben-goldacre-review http://www.guardian.co.uk/books/2012/oct/17/bad-pharma-ben-g... "His tales of drug companies buying the opinion of doctors is not the most alarming of his revelations. Goldacre sets out clearly what is wrong with the way drugs get on to the market. New drugs are tested by the companies that make them, often in trials designed to make the drug look good, which are then written up and published in medical journals. Unless, that is, the company doesn't like the result of the trial (maybe it shows the drug not working or having severe side-effects), in which case this result might be hidden. Regulators should have all the data on a drug's effects but they often don't share it, so researchers can't study the data. The book gives examples of regulatory bodies handing over page after page containing blacked-out results to academics trying to collect data from unpublished trials, the excuse for non-disclosure being commercial sensitivity. Companies pay doctors to extol the virtues of their drugs on the conference circuit (spelling out the sources of information they want doctors to use) and fund patient groups to lobby regulators to approve new drugs."
- oyvindeh 14y ago
  I guess the most easily accessible info is Ben Goldacre's TED talks, based on his books "Bad Pharma" and "Bad Science": http://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe.html http://www.ted.com/talks/ben_goldacre_what_doctors_don_t_kno... http://www.ted.com/talks/ben_goldacre_battling_bad_science.html http://www.ted.com/talks/ben_goldacre_battling_bad_science.h...
oyvindeh 14y ago
People misunderstand things anyway. There is a reason why alternative medicine is huge (even though most of it doesn't work). People believe what they want to believe, fueled by confirmation bias. Journalists suffer from the same problems, as well as the need to write something eye catching. But they already write about diet fads and other non-scientific health claims (and people believe in it), so I don't see how it could get any worse by having more trial data public.
tokenadult 14y ago
One good way to self-educate on medical research in general is to read the Science-Based Medicine group blog http://www.sciencebasedmedicine.org/ http://www.sciencebasedmedicine.org/ regularly. My single favorite link to share in a Hacker News comment is the article "Warning Signs in Experimental Design and Interpretation" by Peter Norvig, director of research at Google, on how to interpret scientific research. http://norvig.com/experiment-design.html http://norvig.com/experiment-design.html Check each news story you read for how many of the important issues in interpreting research are NOT discussed in the story.
- MDS100 14y ago
  I second SBM.
npsimons 14y ago
The last thing we need is pundits and newspapers making wild and broken accusations and 'analysis' based on trying to find the linkbait side to every result. To me, that doesn't sound like a problem with open access, it sounds like a problem with trusting untrustworthy sources. How many times do you see something you know about being reported on, and them getting it wrong? Why would anyone trust pundits and newspapers?
- SCdF 14y ago
  My concern is not that I would (I am actually decent at reading abstracts and things like that, though I still wouldn't trust my opinion on a subject I'm not deeply versed in), it's that other people would. People are still not vaccinating their children because of one broken paper, it's madness. Now, whether or not that means you should have invisible hands curating content before it reaches the eyes of the public, I'm still not really sure where I stand.

by SCdF 14y ago

MBCook 14y ago

If it means that companies can't run 5 studies, and report only the one that shows the drug works better than a placebo, I'm on board.

carbocation 14y ago

I know this isn't what you mean, but taken to the extreme, this is simply an argument against research. I think that what you mean is that people with an agenda will point to a study with, say, a positive but insignificant effect, and say "well there is a positive effect" when they should actually say "there was no effect". In that case, I agree, but there's simply no avoiding that except through better education and more thoughtful phrasing in articles.

SCdF 14y ago
Yeah, I guess what I really mean is that I can understand the want or need for curation of this kind of content. I can also understand that the curation can be done for good (let's not release this cause we screwed up and so the results are pointless and people might get the wrong idea) and for evil (as MBCook[0] said, "let's only release the one study out of 5 that proves the point which makes us the most money"). I typed the parent comment out quickly, and to be honest I'm still digesting my thoughts when it comes to this (I feel that for the most part digestion of these topics is a life constant). [0]http://news.ycombinator.com/item?id=5099379 http://news.ycombinator.com/item?id=5099379
- rhizome 14y ago
  Curation can still happen, and those curatorial outlets will gain credibility on their own terms. Information is for everybody to use, you're arguing for anti-intellectualism.

DanBC 14y ago

> Which in the case of clinical trials and papers in general is 99.9% of people, including myself. There are some books and websites that help, but it'd be great if there were more. Ben Goldacre - Bad Science Michael Harris - Medical Statistics Made Easy Richard Smith - The Trouble With Medical Journals

bitcartel 14y ago
Ben Goldacre has a new book out, Bad Pharma. http://www.guardian.co.uk/books/2012/oct/17/bad-pharma-ben-goldacre-review http://www.guardian.co.uk/books/2012/oct/17/bad-pharma-ben-g... "His tales of drug companies buying the opinion of doctors is not the most alarming of his revelations. Goldacre sets out clearly what is wrong with the way drugs get on to the market. New drugs are tested by the companies that make them, often in trials designed to make the drug look good, which are then written up and published in medical journals. Unless, that is, the company doesn't like the result of the trial (maybe it shows the drug not working or having severe side-effects), in which case this result might be hidden. Regulators should have all the data on a drug's effects but they often don't share it, so researchers can't study the data. The book gives examples of regulatory bodies handing over page after page containing blacked-out results to academics trying to collect data from unpublished trials, the excuse for non-disclosure being commercial sensitivity. Companies pay doctors to extol the virtues of their drugs on the conference circuit (spelling out the sources of information they want doctors to use) and fund patient groups to lobby regulators to approve new drugs."
oyvindeh 14y ago
I guess the most easily accessible info is Ben Goldacre's TED talks, based on his books "Bad Pharma" and "Bad Science": http://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe.html http://www.ted.com/talks/ben_goldacre_what_doctors_don_t_kno... http://www.ted.com/talks/ben_goldacre_battling_bad_science.html http://www.ted.com/talks/ben_goldacre_battling_bad_science.h...

oyvindeh 14y ago

People misunderstand things anyway. There is a reason why alternative medicine is huge (even though most of it doesn't work). People believe what they want to believe, fueled by confirmation bias. Journalists suffer from the same problems, as well as the need to write something eye catching. But they already write about diet fads and other non-scientific health claims (and people believe in it), so I don't see how it could get any worse by having more trial data public.

tokenadult 14y ago

One good way to self-educate on medical research in general is to read the Science-Based Medicine group blog http://www.sciencebasedmedicine.org/ http://www.sciencebasedmedicine.org/ regularly. My single favorite link to share in a Hacker News comment is the article "Warning Signs in Experimental Design and Interpretation" by Peter Norvig, director of research at Google, on how to interpret scientific research. http://norvig.com/experiment-design.html http://norvig.com/experiment-design.html Check each news story you read for how many of the important issues in interpreting research are NOT discussed in the story.

MDS100 14y ago
I second SBM.

npsimons 14y ago

The last thing we need is pundits and newspapers making wild and broken accusations and 'analysis' based on trying to find the linkbait side to every result. To me, that doesn't sound like a problem with open access, it sounds like a problem with trusting untrustworthy sources. How many times do you see something you know about being reported on, and them getting it wrong? Why would anyone trust pundits and newspapers?

SCdF 14y ago
My concern is not that I would (I am actually decent at reading abstracts and things like that, though I still wouldn't trust my opinion on a subject I'm not deeply versed in), it's that other people would. People are still not vaccinating their children because of one broken paper, it's madness. Now, whether or not that means you should have invisible hands curating content before it reaches the eyes of the public, I'm still not really sure where I stand.