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.