4 ms·

"All the data is generally "commercial in confidence" so any old twitteraty can not download and misinterpret it." This is totally the wrong attitude. Everyon

"All the data is generally "commercial in confidence" so any old twitteraty can not download and misinterpret it." This is totally the wrong attitude. Everyone should be able to look at the data. The established authorities are absolutely capable of totally misinterpreting data. The only hope is to let other people look at it.

DarkmSparks 5y ago
In theory I agree with you. In practice, Ive seen too many bad faith actors intentionally drawing false conclusions and then linking to data they say agrees with them that clearly doesnt. Twitter, wikipedia and facebook are terrible for this behaviour, many of the so called fact checkers just as bad. Healthcare trial data analysis is a highly specialised skill, (last one I did took about 3 months of meetings just to understand the dataset, about 6000 columns of abbreviations of complex medical terms) those with the qualifications to analyse it are typically not refused access if they actually want it, something like GPRD is generally more valuable and available to everyone. In Sweden everyones entire medical history is open access for research. There isnt any shortage of data, there is an acute shortage of analysts and finance to cover the costs involved.
- radford-neal 5y ago
  I have seen many studies where they say that qualified investigators can have access to the data if they sign lots of forms, agree to collaborate with (not just acknowledge) the original authors, and wait six months for this all to be approved. I expect that I would be approved if I did all this, but it's not worth it. In some cases I suspect the study is flawed, but debunking it months later would be a lot of work for little return. In other cases, the study looks OK, but without ready access to the data to confirm this (and perhaps get more information with a more sophisticated analysis), it's really pretty much worthless. Yes, worthless. As in no one should put any weight on such unconfirmable "evidence". It's just wasted effort by the investigators, who piddled away their time (and their funding agency's money) because they're not willing to release the data. These are not studies where one would need 3 months to just understand what the variable names mean - perhaps the data was extracted from such a huge database, and perhaps there are issues with how that was done, but there are also quite possibly issues with what they did afterwards, which can be examined separately. Comments by unqualified people on twitter are a fact of life. You can't get rid of them without also eliminating comments that reveal mistakes (even fraud) in what superficially seems like authoritative research. Your judgement that such uninformed comments are intentional lies is probably untrue in most cases.
  - DarkmSparks 5y ago
    >Yes, worthless. As in no one should put any weight on such unconfirmable "evidence". It's just wasted effort by the investigators, who piddled away their time (and their funding agency's money) because they're not willing to release the data. And UK regulators definately do not. If they dont have sufficient data to be confident in the decision they make collecting more a requirement of reimbursement. Here is an example of the guidelines https://www.nice.org.uk/process/pmg20/chapter/reviewing-research-evidence https://www.nice.org.uk/process/pmg20/chapter/reviewing-rese... Taking only a single trial is worthless. Or rather about as useful as taking a murder suspects mothers testimony. Evidence based medicine is simply not broken by not handing out complex, expensive and commercially valuable data to everyone who would like a copy. Any more than the court system is not broken by keeping certain evidence from a jury. >Your judgement that such uninformed comments are intentional lies is probably untrue in most cases. Oh they definately are. Just look at the recent data on covid vaccines published by public health wales to see how bad that situation currently is.

DarkmSparks 5y ago

In theory I agree with you. In practice, Ive seen too many bad faith actors intentionally drawing false conclusions and then linking to data they say agrees with them that clearly doesnt. Twitter, wikipedia and facebook are terrible for this behaviour, many of the so called fact checkers just as bad. Healthcare trial data analysis is a highly specialised skill, (last one I did took about 3 months of meetings just to understand the dataset, about 6000 columns of abbreviations of complex medical terms) those with the qualifications to analyse it are typically not refused access if they actually want it, something like GPRD is generally more valuable and available to everyone. In Sweden everyones entire medical history is open access for research. There isnt any shortage of data, there is an acute shortage of analysts and finance to cover the costs involved.

radford-neal 5y ago
I have seen many studies where they say that qualified investigators can have access to the data if they sign lots of forms, agree to collaborate with (not just acknowledge) the original authors, and wait six months for this all to be approved. I expect that I would be approved if I did all this, but it's not worth it. In some cases I suspect the study is flawed, but debunking it months later would be a lot of work for little return. In other cases, the study looks OK, but without ready access to the data to confirm this (and perhaps get more information with a more sophisticated analysis), it's really pretty much worthless. Yes, worthless. As in no one should put any weight on such unconfirmable "evidence". It's just wasted effort by the investigators, who piddled away their time (and their funding agency's money) because they're not willing to release the data. These are not studies where one would need 3 months to just understand what the variable names mean - perhaps the data was extracted from such a huge database, and perhaps there are issues with how that was done, but there are also quite possibly issues with what they did afterwards, which can be examined separately. Comments by unqualified people on twitter are a fact of life. You can't get rid of them without also eliminating comments that reveal mistakes (even fraud) in what superficially seems like authoritative research. Your judgement that such uninformed comments are intentional lies is probably untrue in most cases.
- DarkmSparks 5y ago
  >Yes, worthless. As in no one should put any weight on such unconfirmable "evidence". It's just wasted effort by the investigators, who piddled away their time (and their funding agency's money) because they're not willing to release the data. And UK regulators definately do not. If they dont have sufficient data to be confident in the decision they make collecting more a requirement of reimbursement. Here is an example of the guidelines https://www.nice.org.uk/process/pmg20/chapter/reviewing-research-evidence https://www.nice.org.uk/process/pmg20/chapter/reviewing-rese... Taking only a single trial is worthless. Or rather about as useful as taking a murder suspects mothers testimony. Evidence based medicine is simply not broken by not handing out complex, expensive and commercially valuable data to everyone who would like a copy. Any more than the court system is not broken by keeping certain evidence from a jury. >Your judgement that such uninformed comments are intentional lies is probably untrue in most cases. Oh they definately are. Just look at the recent data on covid vaccines published by public health wales to see how bad that situation currently is.