Search results

To be clear what I mean by this is that this / these types of questions breach basic guidelines of any research (whether you are market research regulated or any other subject) of making sure that any question you ask must be one that the respondents will be able to /qualified to answer the...

If the researcher turns out to not be doing anything special method wise (really bad if these were all used fir different contexts and aren’t even being checked if it transfers) or more appropriate to the pwme than the nhs would for these and indeed might be getting less oversight (surely the...

Interesting point re a mindset that is applicable to so much who knows whether if the approach had been to see it as a symptom and be monitoring all blood pressure then having (what nhs seems to infer to the world is some sort of wonder database of peoples illnesses) actual monitoring of what...

I would underline ‘do without payback’ and ‘deterioration’ and the thing is that currently we are still in a battle with behaviourist that really only we can tell them what that is whereas underneath they STILL i think have beliefs , flase ones which the Nice guideline was clear was the nub of...

This well summarised there is an important question to be raised with the MEA here and these questions/the answers to them are useful in knowing what is really going on and who has been driving this vs who does have any power to change this if the brief suggested anything different re promises

I’m also concerned that despite asking questions this detail wasn’t sufficiently explained so input could be focused appropriately vs what they planned to do being a ‘best fit’ even within that remit. which is why I’ve been confused and asked elsewhere whether there is some standard protocol...

Indeed that information is pertinent because whether it was justified to pay for it seems in my mind to rely on the ‘control gates’ they have to insist of changes in methodology and oversee stakeholder input being heard properly (not just preferred voices and a nod to consultation whilst doing...

I agree with all of this.

Yes there are lots of papers re:whether it is more accurate to ‘measure the gap directly’ bs calculate the gap by measuring two different time points across lots of literatures particularly service management for example. and of course it sounds like medicine would agree from a method point of...

It’s a very badly worded question. Basic market research how to word a questionnaire says you shouldn’t have multiple loading of questions into each other and you need to make clearer what is being asked. my gut when I was thinking how you’d make these assessments better was to ask people for...

Only an app could inform that - because the reason it’s so hard is we are interpreting patterns (have we had more bad days vs threshold/activity challenges, were these days worse than they would have been the month before) it’s often only three months in you can be sure ‘it’s worse’ due to...

Which is weird because they are focusing more on that - which is relevant for an app which is useful individually because it tells you when things have changed more forensically- but this is instead using using clues to help people avoid PEMseeks to be computing overall scores in a condition...

Yes it was deliberately disingenously worded, classic straw-man. Although filling out questionnaires can also harm people too. It is for her to prove that has not been the case when it is raised as an ongoing concern regarding safety, not the other way around, much as she might 'switch hats'...

It’s appalling isn’t it to imagine these people deliver thee assertions AT people and their ideas have created forced imposition of awful things based on their madness ie it sounds deluded, is deluded and silly but boy is the impact on those targeted not left at small by these people sadly

That one utterly makes sense guven I assume when first diagnosed reading ingredients lists for those terms is important. And given they are small print and lots of items often in said list you’d be training yourself to actively spot those words? there is a reason they put allergens in bold now...

Yep it’s one thing if it were a student paying other students but the amount of effort for severe MS patients to have been dragged in for this makes me think there is a major ethical issue that isn’t unique to ME and needs us to get on board other charities to form a charter of acceptability and...

I think that this is a relevant point to look into - albeit trying to make sure we aren't doing work for the sake of it - what indeed the other PROMS are and whether they are context-bound, in association with other forms of measurement (ie if prognosis and progression is measured separately and...

Thanks @JellyBabyKid I also want to note that these are also methodological points I make from a professional basis, I'm sure you understood this but it is worth this point of clarification for the context of the thread. ie as someone looking to be a sound professional who would use said...

Particularly @Hutan but also any others who might be able to help here as I've had a hectic time of it recently but need to get back up to speed on this? OK so early in this thread I noted the work that had been done on Covid and the Yorkshire rehab scale etc and that one of those involved in...

And when I mention 'professional/basic professionalism' in this here is the code of conduct page for the Market Research Society: Code of Conduct | Market Research Society (mrs.org.uk) Whether someone is a member or not it provides basic standards for a reason, from which other research isn't...