Public Nice guidelines and Cannabis treatment for epilepsy and MS

Binkie4

Binkie4

Senior Member (Voting Rights)
https://www.theguardian.com/society...s-to-back-nhs-cannabis-treatment-for-epilepsy

There seem to be some worrying parallels with Nice’s review of guidelines for ME. If only clinical trials are considered as evidence, where do we stand? Also if the guidelines committee is biased in favour of those who do not approve of cannabis, once again the parallels with our situation jump out.

Is there any way of preempting these problems at this stage rather than waiting for ME guideline publication in Oct 2020?
 
Binkie4 said:
There seem to be some worrying parallels with Nice’s review of guidelines for ME. If only clinical trials are considered as evidence, where do we stand? Also if the guidelines committee is biased in favour of those who do not approve of cannabis, once again the parallels with our situation jump out.
Click to expand...

I am not sure that there are really parallels. The main item on the NICE committee agenda is the decision whether or not to continue recommending therapist-based treatments based on poor quality trials. I think it very unlikely that other treatments are up for recommendation.

If only clinical trials are considered as evidence I think we are at least on reasonably firm ground as long as they are good quality trials.

The main concern people have had in the ME case is that the committee may be biased in favour of treatments with doubtful evidence.

I find it very hard to work out what the situation is for the cannabis preparations. The media do not give us any sensible accounts - just emotional pieces with no facts. Whether or not compounds specific to cannabis oil are effective is pretty hard to judge.
 
“The main concern people have had in the ME case is that the committee may be biased in favour of treatments with doubtful evidence.“

@Jonathan Edwards . Yes, I agree that this is the concern- that a committee that is likely biased in favour of CBT and GET has been constructed, with many whose jobs and publications depending on these therapies sitting on the committee.

I am not sure how Nice deals with the issue of potential bias. Does it ever acknowledge that it exists? We eventually received a reply from Sir Andrew Dillon about this and from memory think he said the views on the committee were balanced, but I think patients have concerns about this.

With regard to clinical trials, do we know yet if US research is to be admitted? We may know that PACE and other UK trials cannot be described as good quality but “ eminence” may prevail. Cochrane is still vacillating, unless I am very behind which is possible since I am away. Do we know where the current editor stands?
 
Binkie4 said:
he said the views on the committee were balanced
Click to expand...

That is more or less an acknowledgement that bias is allowed. Someone famous said that there is no such thing as a balanced view in science (maybe Feynman?). There are just well thought out views and muddled views. An attempt at balance assigns equal weight regardless of how well thought out. It is like having half the committee climate change deniers.

Binkie4 said:
With regard to clinical trials, do we know yet if US research is to be admitted?
Click to expand...

There is no difference in terms of what country research comes from. US research will be looked at just as much as UK research, I assume. But at the moment there isn't really any research that is likely to be directly relevant to recommendations, other than epidemiology perhaps.

Cochrane definitely seems to have lost the plot. Hopefully NICE have not entirely.
 
That is more or less an acknowledgement that bias is allowed. Someone famous said that there is no such thing as a balanced view in science (maybe Feynman?). There are just well thought out views and muddled views. An attempt at balance assigns equal weight regardless of how well thought out. It is like having half the committee climate change deniers.
Click to expand...
@Jonathan Edwards

Thank you for that Jonathan: I need to think more about it. I understand the climate change point but aren’t the deniers the BPS lot? I assume that CBT and GET are the muddled views. Can we rely on the Committee seeing that? Does it in reality work like that? I need to check Dillon’s exact words but it won’t be for a while until we are home. Maybe he promised balanced numbers not views. Thanks for the insight though.
 
Binkie4 said:
“The main concern people have had in the ME case is that the committee may be biased in favour of treatments with doubtful evidence.“

@Jonathan Edwards . Yes, I agree that this is the concern- that a committee that is likely biased in favour of CBT and GET has been constructed, with many whose jobs and publications depending on these therapies sitting on the committee.

I am not sure how Nice deals with the issue of potential bias. Does it ever acknowledge that it exists? We eventually received a reply from Sir Andrew Dillon about this and from memory think he said the views on the committee were balanced, but I think patients have concerns about this.

With regard to clinical trials, do we know yet if US research is to be admitted? We may know that PACE and other UK trials cannot be described as good quality but “ eminence” may prevail. Cochrane is still vacillating, unless I am very behind which is possible since I am away. Do we know where the current editor stands?
Click to expand...
I can only speak in generalities until the minutes eventually end up in the public domain, but we certainly do consider American trials.

Evidence searches typically scour all English-language publications (I think this covers translated papers too) and committee members are free to raise any additional papers and/or grey literature (surveys, reports, etc) that may be relevant, too.

The committee is not bound by the literature review, which is presented only as a guide. Additionally, each of us has been given access to all the major research outlets so we can do our own research and read papers in full.

In terms of bias, the committee goes over COIs at the start of every meeting. If any relevant COIs emerge, that's noted and the chair can decide what action may be appropriate on a case-by-case basis.

The process is then to try and obtain consensus on any recommendation. If there is dissent within the committee, then that's not a consensus so a recommendation can't be made. So let's say 8 people want to implement recommendation x but 4 people don't--well, that's not a consensus, so the recommendation won't be made.

NICE rarely makes decisions by majority vote any more, because consensus is always preferred. In exceptional circumstances, a vote may need to be called, but in that instance, anyone with a relevant COI would be asked to leave the room, as would any non-voting members (e.g., co-opted members). The vote would then be taken with those who are left over.
 
adambeyoncelowe said:
I can only speak in generalities until the minutes eventually end up in the public domain, but we certainly do consider American trials.

Evidence searches typically scour all English-language publications (I think this covers translated papers too) and committee members are free to raise any additional papers and/or grey literature (surveys, reports, etc) that may be relevant, too.

The committee is not bound by the literature review, which is presented only as a guide. Additionally, each of us has been given access to all the major research outlets so we can do our own research and read papers in full.

In terms of bias, the committee goes over COIs at the start of every meeting. If any relevant COIs emerge, that's noted and the chair can decide what action may be appropriate on a case-by-case basis.

The process is then to try and obtain consensus on any recommendation. If there is dissent within the committee, then that's not a consensus so a recommendation can't be made. So let's say 8 people want to implement recommendation x but 4 people don't--well, that's not a consensus, so the recommendation won't be made.

NICE rarely makes decisions by majority vote any more, because consensus is always preferred. In exceptional circumstances, a vote may need to be called, but in that instance, anyone with a relevant COI would be asked to leave the room, as would any non-voting members (e.g., co-opted members). The vote would then be taken with those who are left over.
Click to expand...
Good to hear. Hopefully the process holds and produces a useful outcome, unlike last time.

Is refutation also accepted as relevant literature? As a generality, of course. *cough* Mark Vinks *cough* Cochrane *cough* Wilshire et al PACE paper *cough* *cough* *loud hacking noise*
 
rvallee said:
Good to hear. Hopefully the process holds and produces a useful outcome, unlike last time.

Is refutation also accepted as relevant literature? As a generality, of course. *cough* Mark Vinks *cough* Cochrane *cough* Wilshire et al PACE paper *cough* *cough* *loud hacking noise*
Click to expand...
It depends on the topic and what the protocol for that topic was. But even if it weren't in the literature search, it could be raised and discussed by any member.

Also, I meant to say before, lay members are equal in every respect to professional members.
 
Binkie4 said:
I assume that CBT and GET are the muddled views. Can we rely on the Committee seeing that? Does it in reality work like that?
Click to expand...

Well, from my reading of the literature involved yes, retaining CBT and GET would be the muddled view. We can rely on the committee having it explained to them why** - in the sense that I shall be explaining to them why this is a muddled view! But as to how it works from there on, that is beyond my ken.

I assume Dillon meant balanced numbers with pro and con views. There is never a justification for that - sas the climate change analogy illustrates. You pick people on the basis of the cogency of their output in the field. What they should have done is to ensure nobody on the committee had a competing interest that would skew their view. That does not seem to have worked out as far as I can see.

**Edit: you may also have noticed that there are one or two sharp people on the committee *cough*.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom