May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by lilpink, Aug 31, 2017.

  1. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
    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 likes this.
  2. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    UK
    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. :)
     
    Mrs Sowester likes this.
  3. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    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.
     
    Mrs Sowester likes this.
  4. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    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?
     
    Orla, Mrs Sowester and JohnM like this.
  5. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
    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!
     
    lilpink likes this.
  6. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    UK
    This is very true :)
     
    Mrs Sowester likes this.
  7. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    UK
    Look at this from 2008 about the NOD project -


    http://www.prohealth.com/library/showarticle.cfm?libid=13895


    - so apparently aiming for the largest cohort of CFS/ME patients in the world yet they didn't deign to tell the patients who were contributing? That's not good is it?

    Even if it's somehow not against the rules it doesn't seem ethically sound to me.
     
  8. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
  9. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    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?
     
    Mrs Sowester and JohnM like this.
  10. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,225
    @lilpink David Marks posted an interesting tweet overnight



    One of the photos is below. An early attempt at MEGA. Is this related to the stuff in your post?

    DJ4tjIbXoAEpmFu.jpg



    [​IMG]
     
    Last edited: Sep 17, 2017
  11. lilpink

    lilpink Senior Member

    Messages:
    872
    Likes:
    5,512
    UK
    It would certainly seem to be.
     
    Demepivo likes this.
  12. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,225
    Going to send you a private message about a related matter..
     
    lilpink likes this.
  13. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,282
    These are the NOD sheets I was given re. occupation and benefits
    Nod8.jpg Nod9.jpg
     
    lilpink likes this.

See more popular forum discussions.

Share This Page