jimells
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If you want to link to my post about being mentally ill, feel free. About all I have left is my big mouth - I might as well use it as long as I can.
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Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”
- Thread starter worldbackwards
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If you want to link to my post about being mentally ill, feel free. About all I have left is my big mouth - I might as well use it as long as I can.
Thanks @jimells
can you point me to the post you mean?
if there is anyone else maybe we could collect a few in one public place (could be anonymous for anyone who doesn't want to go public)
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I was considering (if I can make myself) writing an article about that, in a sense. The issue being for me at the moment, I haven't really gone public about my illness, that may or may not be me/cfs but is on the spectrum (according to the guy I saw about it anyway). My long time pre existing depression of a weird sort (that I tried to get treated for multiple times, and the treatment was harmful) would certainly be mentioned, as would be the acceptance and actual love of some stimgas being applied to me.
The other issue is that I have little or no experience writing like that, especially not for public consumption.
I am still only considering, so please don't assume i will yet.
jimells
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I think Ben Goldacre tweeted a few hours ago in support of the earlier BMJ blog regarding releasing data...
Only 4 people have retweeted his tweet though.
Only 4 people have retweeted his tweet though.
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Note goldacre's proposal is not to release data but to control it and only allow 'researchers' to see the data. There is not a huge problem with making the data anonymous so why keep it secret from patients who need to make decisions and who have lost trust in large tracts of the medical profession. Feels like Goldacre doesn't really believe in openness just sharing with an a controlled group.
Large Donner
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It's almost as if deep down they know that studies without blinding are a joke.
Also remember they sang the praises of CBT and GET in the mid trial literature that was seen by patients. That, when you consider the philosophy behind CBT which is based on changing the way you think therefore the way you respond to questions, is as far away from the concept of blinding as you can get.
Bob
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Why does Goldacre say he agrees with Richard Smith when Richard Smith didn't say anything about making the data inaccessible to patients? Or did I miss something?
Large Donner
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Ah he may be on to something here, maybe starvation in Africa is caused by mental stress.
worldbackwards
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I believe you caught it all there!
snowathlete
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Slight progress from Ben Goldacre that he acknowledges the data should be released (at least to some). Not sure on what basis it is justifiable to restrict it though to only academics. It's beyond silly in this day and age frankly.
Reasons will no doubt be found, followed perhaps by reasons why certain "vexatious" academics should be excluded from the list; and maybe finally reasons why only a hand-picked group of researchers with the requisite credentials (such as previous involvement in large publicly-funded trials into GET and CBT) should have access to the data when it is finally "released". I joke, but more extreme parodies of openness and transparency are perpetrated somewhere in the world every day, and is the UK completely guiltless in this regard historically?
By calling for restricted access, Ben Goldacre misjudges the impression this gives and to whom, and reveals his own allegiance-driven insecurities. He should have the sense to hold his tongue on the matter, and the backbone to let events take their natural course.
SOC
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Agreed. Goldacre's proposal does lead to some interesting possibilities that may backfire in a small way on the PACE researchers, though. The PACE authors have been restricting access to their data to everyone on the grounds that crazy, hostile patients will use it to undermine their valuable work. By suggesting they put the data in a place where they can't control it's release to other researchers, Goldacre has weakened their argument for maintaining full control over the data and who interprets it. Once YODA has all the raw data, Lenny Jason (for example) and his graduates students could do all kinds of analysis of it. There's probably work for a number of master's students there. They don't even need to be looking for flawed interpretation. They just need to do new (and proper) interpretation of that extensive and "valuable" data set. YODA would have no reason not to release the data to another academic in the same field.
Granted, patients could not get direct access, but this is a step in the right direction. Wrench total control away from the PACE authors and let some other academics have a go at the data. We'd have to convince some to do it, but with Coyne and Jason, at the very least, encouraging new interpretation of the data surely there'd be some takers. Graduate students are always in need of research topics.
No doubt none of this worries Goldacre because he's confident the data is sound and responsible researchers can do no harm to the PACE trial by looking at the data.
It's only us hostile militant terrorist patients that get his paranoia raging. Both before I got the diagnosis and after, and well before it became the rage (mid 1980s - early 1990s), I voluntarily gave various psychotherapeutic approaches (both talking and pharmacological therapies) a long hard go, and none of them did a damn thing for me. In fact, in a number of ways I came out of it a lot worse than I went in.
This argument from them that it is just a fear of the stigma against mental illness is a complete crock of shite, and must be vigorously confronted and refuted.
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Responded to Richard Smith's tweet about his blog:
Sorry to ask the obvious, but if Sir Simon established that we don't have negative attitudes towards psychiatry in 1998, why has he been saying since then that we have?
What kind of a personality argues two opposing viewpoints and expects everyone to take them seriously both times?
Simon
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FOI vs PLoS release of data
I think there's some confusion over what James Coyne asked for (brought on by King's treating the request as an FOI). Coyne was asking for release under PLoS One rules, and those applying to that paper in 2012 aren't for full open access, I think, but are restricted to release to academics. Which is all Coyne wanted.
Given Coyne was explicitly making a PLoS One request in his letter:
a) FOI is no defence, since the authors agreed to release the data as a condition of publication and
b) the data isn't for public use (as I understand it, though PLoS One rules now are for public release of data).
As it's not for public use, the anonymisation bit doesnt come into it, as far as I can tell (though presumably there are basic rules about not including names, dates of birth etc.)
Also, PLoS rules provide no scope for policing which academics get the data, as Ben Goldacre is suggesting should happen through YODA. I don't have a big problem with YODA, which sounds like a worthy intiative, but it's not appropriate for a PLoS data request as it's more restrictive.
In short, I think Ben's got it wrong (or is simply being unreasonable), but that the real issue in this particular case is release of the data to any researcher who wants it, not full release to the public. A separate FOI request for a fully-anonymised (and limited) set of PACE data has been approved by the Inforomation commissioner, but is being appealed by QMUL.
Let me know if I've got this wrong
I think there's some confusion over what James Coyne asked for (brought on by King's treating the request as an FOI). Coyne was asking for release under PLoS One rules, and those applying to that paper in 2012 aren't for full open access, I think, but are restricted to release to academics. Which is all Coyne wanted.
Given Coyne was explicitly making a PLoS One request in his letter:
a) FOI is no defence, since the authors agreed to release the data as a condition of publication and
b) the data isn't for public use (as I understand it, though PLoS One rules now are for public release of data).
As it's not for public use, the anonymisation bit doesnt come into it, as far as I can tell (though presumably there are basic rules about not including names, dates of birth etc.)
Also, PLoS rules provide no scope for policing which academics get the data, as Ben Goldacre is suggesting should happen through YODA. I don't have a big problem with YODA, which sounds like a worthy intiative, but it's not appropriate for a PLoS data request as it's more restrictive.
In short, I think Ben's got it wrong (or is simply being unreasonable), but that the real issue in this particular case is release of the data to any researcher who wants it, not full release to the public. A separate FOI request for a fully-anonymised (and limited) set of PACE data has been approved by the Inforomation commissioner, but is being appealed by QMUL.
Let me know if I've got this wrong
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