NICE Guideline stakeholders workshop Jan 2018

Good work.
Hopefully we can get a ticket for the meeting although it sounds as if it may be heavily subscribed.
If there is no room it looks as if patient interests are still going to be well represented, but it would be good to be directly involved.

 

Thanks. I've sent an email back, saying that we are interested in attending the workshop, I'll update when I hear back.

 

<snip from email regarding workshop>

If someone from your organisation would like to attend, please register by 15 December 2017 by completing and emailing the attached form to CFSME@nice.org.uk. If you have any special requirements (for example, if you need a hearing loop or wheelchair access) please use the form to notify us in advance.

 

We received an invitation to the workshop, and I've just returned the required form.

 

I've just received email confirmation that S4ME have a place at the workshop.

 

That's really excellent. Well done @Andy

 

Good work. Thank you.

 

Well done...So who's going to go?

 

@Jonathan Edwards kindly offered earlier in this thread.

 

Fantastic @Andy. Well done.

 

Been looking at the procedure for the last guidelines and it would seem that a questionnaire was sent out (2005):
"
To support the Guideline Development Group (GDG’s) in reaching their opinions, we intend to survey a wider group of patients and professionals who have an interest in CFS/ME.
We are contacting you to ask your help in identifying people who would be interested in
assisting us by:
1 Reading the summary of evidence resulting from a systematic review of published research.
2 Rating their level of agreement or disagreement with the various options for investigation and treatment of CFS/ME, after reading the GDG’s ratings."

"
This survey is not part of standard NICE methodology and is being piloted on this guideline.
NICE will be carrying out an evaluation of its effectiveness in supporting guidelines development where there is little firm published evidence."

I can't find the actual questionnaire; it would be interesting to see the results of this survey.

It does not seemed to have made much difference to the outcome but then they had already 'selected the evidence'. But still, it would be good if they did something similar this time around.

https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-4-pdf-196524113

 

Yes.... if results weren't pulished at the time this might indicate a less than ringing endorsement.

 

I have a copy of a NICE questionnaire that is dated 2006 on my system. There is an alarm going off in my brain somewhere regarding problems with the questionnaire(s) at the time. If I remember more will post again.

Getting an error message to say that I can't upload the files here. One is XLS and the other Doc.

 

Have written to NICE to ask how to get a) a copy of the questionnaire and b) the results of the survey.

 

you can always send them to me and i will resave as pdfs

 

Thank you. I've given it a try from here. Both files were from a group that I belonged to at the time of the last Guideline and may have the odd comment from the original contributor but I've tried to remove them first.

 

I have had a reply from NICE.
"The results and a copy of the questionnaire are published in appendix 3"
https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-3-pdf-196524112

The tables of results start on page 31.

"
The survey that we used in the development process for the 2007 guideline was a pilot and an approach that was taken at the time. We no longer follow the guideline development process that was in place when the original guideline was developed, but you can read more about How we develop NICE guidelines on our website. There is a link to the current guidelines manual on the top right-hand corner of the page that explains the process is much more detail.

It’s too early in the development process to say whether we will conduct a similar survey, however the guidelines manual explains that in order to formulate recommendations, the guideline committee needs to consider a range of evidence from multiple sources, extracted for different purposes and by different methods. This could include the consideration of studies about the views and experiences of people."

 

Thanks. Does it look like they got very few people to complete the questionnaire? I have to admit that trying to combine questions and answers in that document made my head ached. Some copy/pasting might be required when I come back to it.