NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

It was a shocking revelation, via Freedom of Information, that a person who is on first name terms with you and also acknowledged to be connected with the Royal College of Psychiatrists, put pressure on you to alter the NICE review evidence reports after recommendations based on those reports had been agreed and signed off by the Guideline Development Committee [9]

It was worse than that. It had also been signed off by the Executive Committee, and would therefore have required GL to overrule herself.
 
chrisb said:
It was a shocking revelation, via Freedom of Information, that a person who is on first name terms with you and also acknowledged to be connected with the Royal College of Psychiatrists, put pressure on you to alter the NICE review evidence reports after recommendations based on those reports had been agreed and signed off by the Guideline Development Committee [9]

It was worse than that. It had also been signed off by the Executive Committee, and would therefore have required GL to overrule herself.
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Good point. I should have put that in...
 
Moved post

Caroline Struthers said:
Hi Folks

I have fiinally managed to write a follow-up to Gill Leng about the problems with the Cochrane/NICE collaboration idea after the response from Cochrane to my message to Toby Lasserson....will probably wait a bit before Tweeting it myself but you are welcome to...I can't tweak the blog as it is the email I sent. The Legal and General (old job) email addresses for Samantha Roberts bounced, so I may send it to her via Twitter...

https://healthycontrol.org/2021/12/31/letter-to-gill-leng-nice/
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As a charity, Cochrane is not subject to Freedom of Information requests.
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I fear that using an unregulated organisation like Cochrane, who are not subject to FOI, and who stonewall reasonable criticism of its reviews, would be a false economy.
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This does raise a very important point: How can it be legitimate for organisations having so much influence on public health, to be so protected from public scrutiny? Why should any organisation be protected from FOI scrutiny if it clearly has a significant role influencing public health systems? Is it a problem with the scope allowed for FOI requests? Or a problem with what sort of organisations can be registered as charities? Both? ... and more? For me I have to say it seems ludicrous that an organisation such as Cochrane can be deemed a charity. How can it be that any organisation having such influence can be unregulated? It's bonkers.
 
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should they even be allowed to do it? Is it within their powers. What authority is there for the, to delegate or share powers? I know nothing about the particular legislation, but surely Parliament gave the powers to NICE, not to Cochrane, or NICE+Cochyane.
 
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Barry said:
This does raise a very important point: How can it be legitimate for organisations having so much influence on public health, to be so protected from public scrutiny? Why should any organisation be protected from FOI scrutiny if it clearly has a significant role influencing public health systems? Is it a problem with the scope allowed for FOI requests? Or a problem with what sort of organisations can be registered as charities? Both? ... and more? For me I have to say it seems ludicrous that an organisation such as Cochrane can be deemed a charity. How can it be that any organisation having such influence can be unregulated? It's bonkers.
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Absolutely! There was a campaign to make charities subject to FOI. I am not sure why it never got anywhere. I looked into it a while ago because I (obviously) wanted to FOI Cochrane. More recently, for example, I wanted to know why they changed their review withdrawal policy (in 2019, just after I had met with the Editor in Chief to beg her to withdraw the Exercise review) which now allows reviews to stay on the Cochrane Library forever, even if they are misleading and/or out of date. The definition of a "serious error" in a review does not include manipulation of GRADE to flatter an intervention favoured by the review authors, or a review being 13 years out of date with no prospect of it being updated.
 
If Cochrane are seeking to become formally involved in matters of public policy these matters need to be scrutinised by MP's. Perhaps the matter should be put to Jeremy Hunt via friendly MPs.

It is perhaps fortunate that Sarah Wollaston is no longer chair of the select committee. She might have had to recuse herself in view of the family relationships.
 
dave30th said:
Oxford NHS foundation trust also produced the covid recovery advice based on CBT/GET that they then took down.
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Anecdote alert. I spoke to a friend recently who said the daughter of a friend of hers has had Long Covid for months. She was seen at a Long Covid clinic based at the Churchill hospital recently...I think this LC clinic focusses on issues with the heart (or maybe lungs). The recommended treatment for her was 5 minutes of exercise per day for a week, and then 5.5 mins exercise per day for a week etc. I will try and find out more details.
 
Surely if NICE and Cochrane are going to be partners, then given that one of those partners is already a public body liable to FOI requests, then there should be some mechanism by which the other partner "inherits" the same public body liabilities. Otherwise public bodies could get around their own legal responsibilities by simply farming out some of their activities to non-public bodies. Either way, once there is that sort of relationship, the liabilities of both should default to be the same as those for the public body.
 
Charities and the Freedom of Information Act
Date posted: 06/02/2020
..there is an ongoing debate about extending FOIA to private organisations (including charities) delivering public services and a recent report from the Information Commissioner's Office (ICO) supports this.
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In some circumstances, information belonging or relating to a charity may be disclosable under FOIA because it is considered to be held by or on behalf of a public authority.
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a charity enters a public services contract with a public authority and generates significant internal information relating to performance of the contract. It is possible that some of this information may be disclosable under FOIA
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https://www.russell-cooke.co.uk/insight/briefings/2020/charities-and-the-freedom-of-information-act/

It would appear that if they (Cochrane) now have a formal agreement with NICE then they no longer will be able to use their 'charity' status to be totally exempt from foi s .
 
Barry said:
Surely if NICE and Cochrane are going to be partners, then given that one of those partners is already a public body liable to FOI requests, then there should be some mechanism by which the other partner "inherits" the same public body liabilities. Otherwise public bodies could get around their own legal responsibilities by simply farming out some of their activities to non-public bodies. Either way, once there is that sort of relationship, the liabilities of both should default to be the same as those for the public body.
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Unless there is some exclusion such as "commercial interest" then the dealings between a public body and a non public partner are subject to FOIA via the public body, this would apply to all areas that are covered by any formal agreement between the two entities. Of course contacts outside the formal agreement and outside the public body's usual resources (email etc) would not be covered, but that is true of such contacts between two public bodies.
 
Sly Saint said:
Charities and the Freedom of Information Act
Date posted: 06/02/2020




https://www.russell-cooke.co.uk/insight/briefings/2020/charities-and-the-freedom-of-information-act/

It would appear that if they (Cochrane) now have a formal agreement with NICE then they no longer will be able to use their 'charity' status to be totally exempt from foi s .
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CRG said:
Unless there is some exclusion such as "commercial interest" then the dealings between a public body and a non public partner are subject to FOIA via the public body, this would apply to all areas that are covered by any formal agreement between the two entities. Of course contacts outside the formal agreement and outside the public body's usual resources (email etc) would not be covered, but that is true of such contacts between two public bodies.
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Excellent!
 
Barry said:
Otherwise public bodies could get around their own legal responsibilities by simply farming out some of their activities to non-public bodies.
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@CRG has pointed out that a public body retains its statutory duties. Therefore, on the face of it, NICE can engage in whatever "relationships" it sees fit to i.e. regarding the delivery of its statutory duties - preparation of guidelines.
The problem re NICEs relationship with Cochrane is that it not coherent policy given:
  • Cochrane's use of GRADE and the fact that GRADE accepts/validates unblinded studies with subjective outcome criteria - so as @strategist has pointed out, even homeopathy would be shown to be effective;
  • NICEs responsibility to prepare evidence based guidelines and maintaining public confidence in the exercise of its functions - so Cochrane relationship is incompatible. Also, the behaviour of certain leading figures in Cochrane, like Paul Garner (praising leading figures in the lightning process) is not compatible with NICEs responsibility to maintaining public confidence in the system of producing guidelines.
The way to tackle this is exemplified by the submissions made by @Caroline Struthers That highlights the issues of using Cochrane/GRADE and the fact that the relationship is not appropriate given the fact that it undermines the credibility of NICE.

Barry said:
FOI requests
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Discussion of FOI requests has been moved to the members only area on this thread.
 
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CRG said:
I guess they've agreed some set of protocols about how each uses data, very likely based on what has already been happening without a formal agreement, and this will mean that whenever Cochrane produces a review this can translate into a NICE update without NICE having to go through the full round of its processes.
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In their response to me NICE stated that the evaluate all reviews i.e. they do not use Cochrane reviews without reviewing them. If true then what use is the link to Cochrane i.e. if NICE has to carry out their own evaluation?
EDIT - I've posted an extract from NICEs email to me below.

CRG said:
As a management approach it looks to be very sensible, how it works in practice time will tell. I don't think it is particularly sinister although the rule of unintended consequences will no doubt produce some interesting outcomes over time.
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Yes as a "management approach", and assuming that management neither know nor care (to be fair I've experienced that), then it makes "sense"! Bear in mind @strategist comments that with suitably subjective outcome criteria even homeopathy can be shown to work and GRADE/Cochrane looks like vehicle to prove it ---- unblinded studies with subjective outcome criteria are considered moderate quality evidence!

As per @Caroline Struthers ----:banghead::banghead::banghead:-----
 
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Caroline Struthers said:
But NICE will save money because they won't have to pay professional non-conflicted reviewers any more.
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Here's an extract from a response I received from NICE*. Assuming these statements, from NICE, are accurate (I copied my responses to the ME/CFS APPG & Covid APPG - so they had better be!) then NICE independently assesses the evidence. If so then where is the saving?

*NICE to me:
"Each review question in the NICE guideline has its own review protocol agreed by the guideline committee. These protocols are different to those used by Cochrane reviews (for example, different inclusion and exclusion criteria), and the NICE guideline conducted its own independent systematic reviews based on Developing NICE guidelines: the manual<https://www.nice.org.uk/process/pmg20/chapter/introduction>.

In terms of quality assessment of the evidence, the NICE guideline committee exercised their clinical judgement to decide which components of GRADE were important for downgrading evidence quality, for example, risk of bias, population directness, and threshold(s) for minimal clinically important differences. The full details of the review protocol and data analysis relating to exercise therapy in NG206 can be found in Evidence review [G] for the non-pharmacological management of ME/CFS<https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028>. The clinical evidence summary tables for exercise interventions, including GRADE analysis, begin on p.147.

These differences between the methods and processes of Cochrane reviews and NICE guidelines can result in different quality ratings of the evidence in GRADE, as in this case with exercise therapy for ME/CFS."
 
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