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Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS

Mrs Sowester

Mrs Sowester

Senior Member
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1,055
My pleasure Lilpink.
I was planning to post the other seven at two per day, but I'd be happy to post them sooner or message them to anyone who'd like to see them.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Mrs Sowester said:
My pleasure Lilpink.
I was planning to post the other seven at two per day, but I'd be happy to post them sooner or message them to anyone who'd like to see them.
Click to expand...
I think it's worth having them a few at a time..that way more people might see the thread over time. It does seem to be gaining a tad more traction now. But thanks for your offer to PM all the questionnaires for other interested patients/ PR 'bods'... that's very helpful. :)
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
NB The NOD was being collected from 2004 onwards and we're trying to get a better picture of the whole NOD endeavour. For example, the NOD data used for this paper https://academic.oup.com/qjmed/article-lookup/doi/10.1093/qjmed/hct061 was collected in almost the exact time frame over which the PACE Trial took place.


Thanks to Mrs Sowester for that list. Just to point out that there were more questionnaires to complete at the 12 month mark or on discharge than there would have been at the beginning of referral/treatment.

Likely - 5 or 6 forms at assessment stage, 7 to 10 at 12 months/discharge.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
According to information entered as part of a REC application (number 14/NW/0242, now quoted on this Simon Collin study - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5513420/ )


the NOD has been collecting assessment data and PROMs since 2006. But some published papers indicate that the collection was from 2004 or January 2005, strange that. ( http://bmjopen.bmj.com/content/5/10/e008830.full - August 2004 , and https://academic.oup.com/qjmed/article-lookup/doi/10.1093/qjmed/hct061 - January 2005 ).


According to the same REC application - (NHS REC Form Reference: 14/NW/0242 IRAS version 3.5) -


“The set-up and running costs for the NOD were funded initially by Action for ME, the UK’s leading charity for people with CFS/ME.”

“The NOD assessment forms and questionnaires were agreed upon in a collaborative process based on a series of workshops involving clinicians, researchers, patient and carer representatives, and patients support groups.”


With such regard for patient involvement it's odd that patients involved in the NOD didn’t know what they were contributing to. And I wonder when that 'collaborative process' took place - 2004, 2005 or 2006?
 
Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
Just wanted to say that the individual dealing with this behind the scenes is incredibly risk averse. You can trust this person with your information.
So, just to reassure anybody who is in two minds about contributing - don't worry!
 
Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
NOD4.jpg
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
From REC application 14/NW/0242 (that was quoted for this study - https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3 by Simon Collin and Esther Crawley) the following intrusive questions have in recent years been asked of NHS CFS/ME clinic patients who completed the ‘Background Information’ questionnaire. NB Patients were possibly completely unaware that this data was destined for the NOD.

Sick Pay or benefits currently received:

Tick all that apply


Statutory sick pay Y / N

Employment and Support Allowance (ESA) Y / N

Personal Independence Payment (PIP) Y / N

Daily Living Component Standard / Enhanced

Mobility Component Standard / Enhanced


Independent Living Fund Y / N

Do you have a carer? Y / N

If yes, do they receive a carer’s allowance? Y / N

Other Y / N

If yes, please describe


According to the same REC application, the ‘Action for ME’ charity is represented on the NOD Steering Group, so were ‘Action for ME’ aware of patients being asked these intrusive questions? Did ‘Action for ME’ agree to these benefits questions being included?


There doesn’t appear to be any published NOD study that uses this particular set of collected data. So what was the purpose of collecting it? Any ideas anyone?
 
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