Discussion in 'General ME/CFS News' started by mango, May 23, 2016.
@Tom Kindlon gets a well deserved mention
Can anyone simplify this? I don't understand the argument being made
Just to clarify, while this is the paper where the authors are refusing to make the dataset available (depsite agreeing to as a condition of publishing), the issue raised by Prof Racaniello and colleagues is diffferent, and points to a significant error in the paper.
Basically, the paper claims that CBT/GET are cost-effective regardless of assumptions made about the economic cost of care provided by friends and family. Yet it appears this isn't the case at all.
Here's the bit of David Tuller's analysis the letter cites:
They are asking for the lead author, Dr Paul McCrone, to either publish the evidence for the claim of a 'robust' finding, or for PLoS One to issue its own correction:
I believe it was @Simon who first noticed how much they had valued informal care.
Here's a quick comment I wrote elsewhere which perhaps summarises it very briefly.
This open letter is by five US academics
It's about the £5 million PACE Trial and the investigators' questionable claim that CBT and graded exercise therapy were found to be cost-effective.
It was really outrageous that they wrote:
"Fourth, we made assumptions regarding the value of unpaid care from family and friends and lost employment. However, sensitivity analyses revealed that the results were robust for alternative assumptions."
They (well, Paul McCrone) have subsequently admitted that this is not the case and the results are very different with alternative assumptions.
The paper reported that CBT and GET were cost effective under all assumptions. Three different assumptions were made for "informal care", which would be care provided by family members:
1. That informal care was valued at the cost of a homecare worker.
2. That informal care was valued at the minimum wage.
3. That informal care was valued at zero.
Readers, including Tom Kindlon, pointed out that under assumption 2 and 3, CBT and GET would not be cost effective.
The lead author conceded that this was correct, but no steps were taken to correct the paper, which still reports that CBT and GET are cost effective no matter how informal care is valued. Instead the lead author began arguing that valuing informal care at minimum wage or zero would be controversial.
James Coyne had previously requested the relevant data in order to perform a cost effectiveness analysis. The authors have refused, going against the journals data sharing policy.
The letter points out that, since the lead author has conceded that the conclusion is wrong, there is no need to actually perform an independent cost effectiveness analysis. The lead author must now either provide an explanation or correct the paper. If he refuses, the journal will have to correct the paper.
At least that's how I understand all this.
PS: if we want to simplify it even further, we could say that readers have apparently found an error with the statistical analysis, but the authors have taken no action to correct it after admitting its existence (whilst refusing to release the data for an independent analysis).
I think £14.60 is national mean earnings for everyone, not homecare workers.
Mean earnings are higher than median earnings as they include millionaires, etc.
By way of comparison, the minimum wage was £5.93. Homecare workers don't tend to be that well paid.
Thanks for pointing this out. I'm going by the letter which says
Why are they making the claim in bold (my bold)?
Also for clarity, the PLOS one paper data issue raised by James Coyne being processed by FOI is still unsettled and the QMUL FOI data release is to do with the original Lancet paper. Is that correct because Its getting very confusing now?
The workers are not necessarily paid much more than minimum wage but they are usually employed by an agency who charge a considerable amount more than they pay the worker. They also often get paid mileage and transport costs.
This statistical analysis plan was not published until over a year after the cost-effectiveness paper was published. This is why we didn't know how they had promised to analyse the data when the cost-effectiveness paper came out initially.
They do have a habit of selectively reporting information. The fitness graph (which totally contradicts any claims of improvement) took years to be published. The data is still withheld.
All FOI requests for PACE data are processed by QMUL because they hold all the trial data relating to all publications. So QMUL would deal with requests for data from the original Lancet paper or the PLOS paper. James Coyne has asked PLOS to obtain the data from the authors, as part of their contractual agreement with PLOS. I think James also made a request to QMUL for data but it wasn't a formal FOI request; QMUL converted his request to an FOI request then rejected it. Clear as mud?
That's answered in the blog...
Thanks Bob. The request that is going through appeal now was filed by whom and against which study in which publication?
JC made the request to Paul McCrone (this Health economist) at Kings College who automatically regarded it as a FOI.
I have not read this PLOS One paper in detail so if anyone knows of a good summary which explains the issues and regarding the QALY it would be good?
I have a question.
Carers allowance in UK is per week £62.30 for full time carers. This is the ridiculously low amount that full time carers (minimum 35 hours) are valued at in the UK. When the PACE trial was done it would have been about £45-55 per week due to inflation. This is the official rate.
Who specifically sets the rate of £62.30 you may ask?
Answer: The DWP who were the funders of the PACE trial and who Peter White works for!
The hourly rate at 2016 levels is £1.78.
Why was that not used?
I thought it was a mistake to emphasise that access to the data was not needed in the way they did.
I do understand wanting to make clear that what is already in the public sphere allows us to make certain criticisms confidently, but getting access to PACE data is going to be important for drawing other people's attention to these problems imo.
A small quibble with otherwise great work though. Thanks to all the signatories.
edit: Also I wrote this before half the posts on this page had been made... slow typer!
I'm sorry i must be really stupid but there still seems to be something missing from this explanation. If the more expensive care (1.) is considered cost effective how could lowering the cost not be considered cost effective?
You can also try a Google Site Search
Separate names with a comma.