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The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

Discussion in 'Subjective outcome measures (questionnaires)' started by Trish, Jul 12, 2024.

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  1. Trish

    Trish Moderator Staff Member

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    Yes. Sorry not to be clearer.
     
    Trish, Jun 3, 2025 at 9:34 PM
    #41
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Yeah, I definitely wouldn't touch that. So many red flags, it's like a giant red flag made of smaller red flags.
     
    rvallee, Jun 4, 2025 at 7:52 PM
    #42
    MrMagoo, Trish, alktipping and 2 others like this.
  3. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    More red flags than a Turkish/Chinese army parade in Switzerland!
     
    MrMagoo, Jun 4, 2025 at 8:41 PM
    #43
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  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    One of the advisory board Is Helen Dawes
    https://experts.exeter.ac.uk/38045-helen-dawes

    She created report based on MEAs “count ME in” project.

    Earlier diagnosis and better care needed for ME and Long COVID patients, report finds - News
    https://news.exeter.ac.uk/faculty-o...-for-me-and-long-covid-patients-report-finds/


     
    Last edited: Jun 5, 2025 at 12:42 PM
    Cinders66, Jun 5, 2025 at 12:35 PM
    #44
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  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    MEA & Elaros joint event
    https://www.eventbrite.co.uk/e/inte...=ebdsshother&utm_share_source=listing_android


     
    Cinders66, Jun 5, 2025 at 3:24 PM
    #45
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  6. Kitty

    Kitty Senior Member (Voting Rights)

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    Hmm. So other people continue to get access to NHS services, under pressure as they are, and we get fobbed off with useless apps?
     
    Kitty, Jun 5, 2025 at 3:30 PM
    #46
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  7. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    Oh wow this is big news.

    Thisnisnt much of a comment, just trying to attract attention to the above. So the app and PROMs are all tied together, and with the MEA “we’re not recommending it” ok but you do seem to be funding it…
     
    MrMagoo, Jun 5, 2025 at 3:48 PM
    #47
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  8. Trish

    Trish Moderator Staff Member

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    It says the webinar was held on 5th February, it doesn't say which year.
     
    Trish, Jun 5, 2025 at 4:01 PM
    #48
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  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Attached Files:

    Cinders66, Jun 5, 2025 at 4:07 PM
    #49
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  10. Trish

    Trish Moderator Staff Member

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    Trish, Jun 5, 2025 at 4:07 PM
    #50
    Kitty likes this.
  11. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    It’s the axis of MEA, PROMS and Elaros OH Beta- test app.
    They are all tied together
     
    MrMagoo, Jun 5, 2025 at 4:28 PM
    #51
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  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    It's background about elaros who afaiu are behind the app. If it's of no interest or irrelevant please delete
     
    Cinders66, Jun 5, 2025 at 4:29 PM
    #52
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  13. Trish

    Trish Moderator Staff Member

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    Sorry, I didn't mean to suggest it is of no interest, just asking whether it's the same product being discussed. The Elaros seminar is definitely of interest and very concerning.

    I am so disappointed to hear that Tyson and the MEA are still working on their PROMs and guide for clinics and are working with BACME too. What on earth is going on here.
     
    Trish, Jun 5, 2025 at 4:34 PM
    #53
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  14. Kiristar

    Kiristar Senior Member (Voting Rights)

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    Exactly this. Plus they get to harvest a load of anonymised data about us to sell to US insurers under HIPAA.
     
    Kiristar, Jun 5, 2025 at 4:55 PM
    #54
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  15. Kiristar

    Kiristar Senior Member (Voting Rights)

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    However I see the event also includes

    "Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years."

    So perhaps it warrants its own thread as it encompasses a mixed bad of topics?
     
    Kiristar, Jun 5, 2025 at 5:00 PM
    #55
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The MEA have always called it 'being inside the tent' I think.
     
    Jonathan Edwards, Jun 5, 2025 at 5:09 PM
    #56
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I got briefly involved in the Suffolk plans but don't know where things go to. @Suffolkres will know.
     
    Jonathan Edwards, Jun 5, 2025 at 5:11 PM
    #57
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  18. Andy

    Andy Retired committee member

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    Which is fine if they are effectively advocating for pwME, which doesn't seem to be the case nowadays.
     
    Andy, Jun 5, 2025 at 5:15 PM
    #58
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  19. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    It’s a real bunch of tangled somethings.
     
    MrMagoo, Jun 5, 2025 at 5:30 PM
    #59
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  20. JemPD

    JemPD Senior Member (Voting Rights)

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    I'm massively confused here... so the NHS & DWP are developing an app to do (in DWP case) some nefarious thing under the guise of 'assisting' people like us. And ELAROS are the app developers, who're walking hand in hand with MEA & their PROMs project in order to do it???

    Is that whats happening I cant understand it
     
    JemPD, Jun 5, 2025 at 5:40 PM
    #60
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