O'Dowd-Crawley early intervention study

Lucibee said:
I very much doubt that they would grant the necessary permission for us to write it up and submit it to a journal. The onus to do so really is on them. It's their data - and only they can make the necessary guarantees about it as a published trial.
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This is an interesting suggestion. In days gone by I would not have doubted it for a minute. But things are changing and one could argue that nobody owns data if it is in the public domain and is of public interest in terms of medical implications.

I think this would be a very interesting test case. Clearly the Wilshire et al paper has pushed the boundaries a bit already. I suspect that there are editors around prepared to help push a bit further.

The study should be published because there are inferences to draw and it involved patients. If the investigators cannot persuade an editor to publish then others should be entitled to try.
 
JohnTheJack said:
A further update.

I have been dealing with one authority and the point of contact there has been really helpful and thanked me for bringing the lack of publication to their attention. It seems that UoB has joint authority and is the one saying that there needs to be guidance from the ICO. In asking for this guidance the UoB quoted an ICO decision saying that due to the 'relatively small geographic and temporal space', results from a paediatric trial could not be released. I asked which decision that was and, as I rather suspected, it was... the decision for the SMILE trial, the decision that was overturned on appeal by, hmm, me.

In any case, the guidance should be received within 14 days, so not as bad as I first thought.
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This is either a very naive attempt at conspiracy by Bristol - vastly overestimating their ability to pull the wool over your eyes - or an hilariously slapdash cock up.
 
Jonathan Edwards said:
This is an interesting suggestion. In days gone by I would not have doubted it for a minute. But things are changing and one could argue that nobody owns data if it is in the public domain and is of public interest in terms of medical implications.
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Would this be the first time that third parties have published a report on someone else's study that they tried to hide in their bottom drawer?
 
NelliePledge said:
This is either a very naive attempt at conspiracy by Bristol - vastly overestimating their ability to pull the wool over your eyes - or an hilariously slapdash cock up.
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Just to clarify: UoB would have no idea that I have asked for the data. They would just know someone has. At least I presume that is true as to identify me would be revealing personal information contrary to the DPA and I would expect departments dealing with the FOIA and DPA to conform.

It does seem a little disingenuous of UoB to quote this decision, though, knowing that it was overturned on appeal.
 
JohnTheJack said:
Just to clarify: UoB would have no idea that I have asked for the data. They would just know someone has. At least I presume that is true as to identify me would be revealing personal information contrary to the DPA and I would expect departments dealing with the FOIA and DPA to conform.

It does seem a little disingenuous of UoB to quote this decision, though, knowing that it was overturned on appeal.
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Ah ok. Unlucky for them it actually was you then.
 
JohnTheJack said:
Just to clarify: UoB would have no idea that I have asked for the data. They would just know someone has. At least I presume that is true as to identify me would be revealing personal information contrary to the DPA and I would expect departments dealing with the FOIA and DPA to conform.

It does seem a little disingenuous of UoB to quote this decision, though, knowing that it was overturned on appeal.
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Surely they would assume that this small band of militant activists who do nasty things like FOI requests and say mean things to/about psychiatrists would be in close communication though.
 
'While the ICO do not make formal adjudications, except where a formal complaint is lodged, the ICO confirmed they were satisfied that NBT had applied the regulations appropriately and undertaken appropriate due diligence in reaching the decision to disclose the information.'

And here is the complete dataset, I think.

1. I would be grateful if someone could confirm that this is everything. (Maybe @Lucibee if you have the time?)

2. I shall then thank them for it and ask for the Information Booklet. Is there anything else?

3. I would be interested in writing this up in the hope of publication. Is there anyone who would be interested in working with me? I couldn't do the analysis. Would anyone want to do that bit in particular?
 

Attachments

JohnTheJack said:
'While the ICO do not make formal adjudications, except where a formal complaint is lodged, the ICO confirmed they were satisfied that NBT had applied the regulations appropriately and undertaken appropriate due diligence in reaching the decision to disclose the information.'

And here is the complete dataset, I think.

1. I would be grateful if someone could confirm that this is everything. (Maybe @Lucibee if you have the time?)

2. I shall then thank them for it and ask for the Information Booklet. Is there anything else?

3. I would be interested in writing this up in the hope of publication. Is there anyone who would be interested in working with me? I couldn't do the analysis. Would anyone want to do that bit in particular?
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There frankly isn't much usable data. This is low effort even by Chalder's standards. It seems they are just playing with spreadsheets and copy-pasting the same work over and over again, doing roughly the same analysis despite there being no value in it.

Most of the variables are useless, basic psychometric questionnaires and basically the same set as in every other Chalder research. There are only two partially relevant data points: SF-36 and hours missed from work. The latter is hard to interpret as it's compared to what? Are they all people who used to work 40h normal weeks before? Few actual changes at 6 months. It's the only objective measurement and somehow it manages to be mostly subjective and open to interpretation. All but 5 rated as having missed fewer than 10h in the past 7 days, with most actually rating 0. There is an outlier that "missed" 44h of work at baseline and "missed" 56h of work at 6 months. So I guess someone working 56h week having dropped to 12 then 0? Really not sure how to interpret that.

SF-36 is all over the place, from 5 to 100 (the 5 did not submit at 6 months). There are 3/44 at 100 and 8/44 >=85. It doesn't look to be a valid cohort to begin with, I don't know how anyone can both have a diagnosis of CFS and rate 95+ on SF-36. Because of missing data, somehow average of both columns (baseline and @ 6 months) add up to the exact same number (61.7045). Somehow removing entries that did not report at 6 months actually yields another exact tie (this time at 63.472). This is peak GIGO.

There is one data point that I can't understand. It's wpai_q1-2_: "number in paid work at baseline/6 months". It's either a 1 or a 2 but there is no explanation what either stands for. Number of what?

The only value I could see in publishing an analysis would be in just how incredibly bad and useless this kind of research is. This is an embarrassing waste of public funds and everyone involved should be ashamed of themselves, if they were capable of shame anyway.
 
rvallee said:
There frankly isn't much usable data. This is low effort even by Chalder's standards. It seems they are just playing with spreadsheets and copy-pasting the same work over and over again, doing roughly the same analysis despite there being no value in it.

Most of the variables are useless, basic psychometric questionnaires and basically the same set as in every other Chalder research. There are only two partially relevant data points: SF-36 and hours missed from work. The latter is hard to interpret as it's compared to what? Are they all people who used to work 40h normal weeks before? Few actual changes at 6 months. It's the only objective measurement and somehow it manages to be mostly subjective and open to interpretation. All but 5 rated as having missed fewer than 10h in the past 7 days, with most actually rating 0. There is an outlier that "missed" 44h of work at baseline and "missed" 56h of work at 6 months. So I guess someone working 56h week having dropped to 12 then 0? Really not sure how to interpret that.

SF-36 is all over the place, from 5 to 100 (the 5 did not submit at 6 months). There are 3/44 at 100 and 8/44 >=85. It doesn't look to be a valid cohort to begin with, I don't know how anyone can both have a diagnosis of CFS and rate 95+ on SF-36. Because of missing data, somehow average of both columns (baseline and @ 6 months) add up to the exact same number (61.7045). Somehow removing entries that did not report at 6 months actually yields another exact tie (this time at 63.472). This is peak GIGO.

There is one data point that I can't understand. It's wpai_q1-2_: "number in paid work at baseline/6 months". It's either a 1 or a 2 but there is no explanation what either stands for. Number of what?

The only value I could see in publishing an analysis would be in just how incredibly bad and useless this kind of research is. This is an embarrassing waste of public funds and everyone involved should be ashamed of themselves, if they were capable of shame anyway.
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Thanks. Interesting. Does the dataset (such as it is) look complete to you, as in, they have given us all there is to be had?
 
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