[Written 9.vii.21]
NICE is having a consultation. As the Email I got says:
We have now embarked on the latest phase of this user research. I’d like to invite you to contribute so we can better understand your views and experiences of NICE. Your feedback is truly important and will help us continue our journey to transform over the next 5 years.
The survey is open until Friday 16 July 2021. So, please do take 10 minutes to share your views before then.
Complete our short survey
Gillian Leng CBE
Chief executive, NICE
So I started it and got to “Please explain why you feel unfavourably towards NICE.” which had a nice big free text box. So I typed in my set of, I think fair and carefully thought out criticisms (below) and hit the button to move on to the next question and got this.
We’re sorry but your answer has too much text. The current length of your answer is 3944 and the maximum length is 1024 characters. Please change your answer and try again.
Wonderful! No initial warning that only 1024 characters were allowed, no warning as you approach 1024, no block when you hit 1024. Terrible design!
For what it’s worth, these were my 3944 words.
What was originally a system to provide information has morphed relentlessly into something that is used in the commoditisation of health care to dictate what practitioners should do. It is so preoccupied, to a large extent understandably, in containing exploding pharmaeutical costs, that it is very focused on RCT evidence used to assess cost effectiveness. That’s not bad for those pharmaceutical interventions that can be given double blind but even there generalisabillity appraisal is poor with a dearth of attention to post-marketing, “practice based evidence” to see how RCT findings do or do not generalise. For most interventions, all psychosocial interventions, where double blind allocation is impossible, this is crazy and leads almost all research funding to be diverted into RCTs “as they have political influence” but where their findings are such that it is essentially impossible to disentangle expectancy/placebo/nocebo effects from “real effects” (there is an interesting argument about that separation but there is some meaning in it). This goes on to make it impossible with your methodologies to evaluate complex real world interventions including psycho-social ones, impossible to compare those with pharmaceutical or surgical/technological ones and impossible to evaluate mixed interventions.
Decisions are theoretically about quality of life but, at least in the mental health field, all work I have seen has been based on short term symptom data and makes no attempt to weight in what QoL and functioning data does exist. This is not a new issue: McPherson, S., Evans, C., & Richardson, P. (2009). The NICE Depression Guidelines and the recovery model: Is there an evidence base for IAPT? Journal of Mental Health, 18, 405–414. https://doi.org/10.3109/09638230902968258 showed this clearly 12 years ago (yes, I contributed to that). In addition, foci are not always, but are generally, on diseases leading to a neglect of the growing complexities of multi-diagnostic morbidity and of the whole complex interactions of mind and body even when there are crystal clear, organic, primary disorders (Diabetes Mellitus and cancers are a classic example of clear organic pathologies where the complexities of how individuals and families handle the same organic pathology make huge differences in problem and QoL trajectories). In the mental health domain, to make a rather crude physical/mental distinction, there are crystal clear diagnoses of organic origin (Huntingdon’s Disease and a tiny subset of depression, anxiety disorders, much but not all intellectual disabilities and some psychotic states) but the disease model, certainly in simple “diagnosis is all and dictates treatment to NICE guidelines” is often more of a handicap than an aid.
That focus also leaves NICE almost irrelevant when it has to address “public health attitude” issues like obesity, diet more generally, smoking, alcohol and other substance abuse and spectacularly at the moment, attitudes to vaccination and social interventions to minimise cross-infection. Again, cv-19 has exposed this, and the slowness of NICE, horribly, but all the warnings have been there for decades.
In addition, NICE processes come across as increasingly smug (routine Emails I get from NICE long ago lost any sense that there could be any real doubts about your decisions) and the history of the recent depression guideline should be a marker that the good law project should turn from the government to NICE processes. From what I see of that, NICE has come across as opaque and more concerned to protect its processes than to recognise the huge problems with the particular emerging guideline but really more generally.
Why waste time typing all this: this is all so old and has so consistently developed to avoid and minimise problems that I suspect this will be another process of claiming to have been open and listening but changing little.