NICE refused to accept THRo’s comments about THR

For those who might be checking (at least one of you did), our “stakeholder” comments for the UK NICE consultation on “THR” (I use the term loosely because they certainly do) were omitted from NICE’s collection of comments when they posted them.  It seems they have disallowed us from commenting because they do not think we are a stakeholder, despite the fact that they originally accepted our application and declared us such.

If you are interested in reading what they said about this, the full email is copied here.  Basically the upshot is that they claim that as an international education organization, we are not English enough (despite about 1/4 of our readers being from the UK as best we can estimate, and most of our funding for the relevant period coming from England).  It seems rather more likely that their motive is that they are looking for an excuse to ignore what we have to say.

They did, for some reason, go ahead and respond to our comments.  You can read their responses to our comments here.  However, for the record, we just posted them without even reading them.  What would be the point?  We were trying to advise them as experts and consumer advocates.  They should care what we say.  We have little reason to care what they say.

We are not going to bother to appeal their decision for several reasons:

1. As is probably obvious to most of our readers, the entire NICE consultation process is rather a charade, so there is not much point in worrying too much about it.

2. If they were inclined to take our expertise or consumer advocacy viewpoint seriously, they would not care whether we qualified as English enough.  Thus, they have made it clear that they have no interest in our expertise, and will ignore us whether we can win some appeal or not.

3. We honestly think that this “stakeholder” concept, as operations like NICE apply it, is bullshit.  We really are not a stakeholder.  Neither is ASH, or John Britton, or any other advocate or scientific expert on whatever side.  Stakeholders are just that, those who have a substantial direct stake in the matter.  Foremost, this consists of users of tobacco and nicotine products and organizations that explicitly represent them as advocates (like FOREST; maybe we qualify as that, but that seems like a thin reed since we engage in consumer advocacy from a more abstract perspective, and do not claim to represent anyone).  Second-most are those who supply the products, but they are explicitly forbidden from participating.  As a distant third come other individuals who personally care about nicotine users.  Advocates, scientists, and medics are not stakeholders unless they also fit one of these descriptions.  We might have expertise and learned opinions, and that is what they should be asking for, but they are not.  They are asking for stakeholders.  They apparently have no idea who those actually are.

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Comments

  • J Johnson  On July 5, 2011 at 6:47 pm

    I guess this shouldn’t come as any sort of a surprise and truthfully it doesn’t.
    I am only sorry that such hard work went into something that was just tossed away like yesterday’s rubbish.

    😦

  • Thad Marney  On July 5, 2011 at 7:09 pm

    NICE’s comments are worth reading if you need any case studies on cognitive dissonance. They are seemingly very grateful for your assistance in pointing out a few of their more glaring errors.

  • icequebes  On July 5, 2011 at 7:40 pm

    You can’t get cooperation from an organization that makes its living from selling “protection from tobacco harm” to the portion of the public that doesn’t smoke. It is not their intention to reduce tobacco harm to the smokers, which would take some actual hard science to accomplish. Their only possible stakeholders are obviously non-smokers who demand protection from the harm caused to them by smokers. This is an idea that only requires clever marketing and relentlessly churning statistical models based on flawed meta-studies in order to single out Public Enemy No. 1, the Smoker.

    I’m sure American Prohibitionist Carrie Nation of the Women’s Christian Temperance Union believed that the only good drinker was a dead drinker. This is no doubt why she felt that those who died from drinking wood alcohol during the Prohibition her organization engineered were doing an inestimable health and morality service to the nation. Those drinking-related deaths proved her point about the deadly effects of drinking and served to reduce the rodent-like population of those who persisted in the disgusting activity.

  • Michael J. McFadden  On July 5, 2011 at 9:58 pm

    Disgraceful, as is the norm for the Antis. However, if you feel your contribution was worthwhile enough that it really SHOULD be in the official record (maybe ALONG WITH the response from NICE!) I’d be willing to bet that F2C or an allied group that was indisputably Brit would be up for submitting it under their own aegis!

    – MJM

  • daveatherton  On July 6, 2011 at 3:47 am

    As an Executive of F2C I am happy to put it to the Board and submit the evidence.

    Dave Atherton

    daveatherton20@hotmail.com

  • westcoast2  On July 6, 2011 at 7:02 am

    @Dave
    I believe the ‘consultation’ on the draft ia now closed. Onto the next stage. VN did get some comments answered though.

    In general….
    It seems sad THRo has not been admitted as a ‘stake holder’. It is a shame that NICE do not welcome the expertise.

    THRo’s response is understandable. What way forward? How is it possible to get the evidence accepted without taking part in such ‘charades’? When will people start to take notice of what is going on?

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