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Action for ME want your views on their planned 'Patients Know Best' pilot

Discussion in 'General ME/CFS News' started by Simon, Sep 24, 2013.

  1. Simon

    Simon

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    Action for M.E. | Consultations: your views | Patients Know Best pilot project

    Plans for a pilot study using existing 'Patients Know Best' software that explicitly puts patients in control of their records (and who accesses them) and hopefully will improve the amount of care available too. They plan to test online/skype consultations for the severely-affected, as part of this.

    I thought this was particularly helpful in explaining how the system could work to help patients
    Laura: pilot project test case

    This project isn't yet funded or finalised and AfME are asking for people to comment on their ideas.
     
  2. peggy-sue

    peggy-sue

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    :thumbsup: The test case does indeed sound as if it would be a good thing - obviously it will only operate in areas where there are "specialist" ME centres and "teams" and any care plans are drawn up, or if any tests are permitted.

    However AfME are not exactly known for listening to sufferers.
    (I actually snorted out loud when I read the title of this thread. Gave myself quite a fright.:p )

    :cautious: If they really do want patients' views, I would be asking myself why.
    Myself would answer that it was to be able to pre-empt and develop counter-arguments to the patients' views.
    Myself is highly suspicious of AfME and its aims....:cautious:
     
  3. Simon

    Simon

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    My understanding is that they want to make the pilot better by asking for patient input before the study starts, which seems fair enough. You could always get in touch and say you don't trust them, and ask the questions you ask here about their motives. They could be defensive, or maybe they will want to genuinely talk:
     
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  4. peggy-sue

    peggy-sue

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    I was swithering about how appropriate my post was, given this does seem to be something positive coming from them, Simon. Then I got worried as it started getting "likes"!

    I have engaged with AfME before, several times, have been on the Scottish Hub Forum and their other main one, and they are defensive when criticised. You get the same official speil every single time.
    "Experts disagree"
    "there are no biomarkers"
    "GET and CBT are proven successful treatments"
    "there is no biomedical research published"

    Or your post is moderated.

    Being in scotland, this would not be applicable to me anyway, so I suppose my opinion doesn't matter.

    But I could not operate the technology required.:rolleyes:
     
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  5. Esther12

    Esther12 Senior Member

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    I think it's entirely reasonable to be suspicious of Action for ME's projects, and condemning of how they've worked against the interests of patients. They seem to be perfectly happy with the way in which the results from pace have been spun, and have been giving statements specifically intended to prevent the release of more information to patients from FOI requests. This new project seems like an utter distraction from the vitally important matter of ensuring that patients are able to make their own informed decisions about their care, and that those who make misleadingly positive claims about prognosis or the efficacy of treatments face appropriate disciplinary action. Instead, action for ME seems to be working to ensure that those who mislead patients are given ever more money.
     
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  6. Snow Leopard

    Snow Leopard Senior Member

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    How are we meant to comment?

    My comment would be of one of efficacy, the ultimate success of the programme should be based on objective outcomes, not self report questionnaires, otherwise it is just another waste of time.
     
  7. Bob

    Bob

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  8. Firestormm

    Firestormm Guest

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    Is there a cost attached to any of this for the patient? To use the software I mean? You know outside of any trial? Would an ME charity run such a thing if it did prove suitable? What would the cost be to them? Or would the intention be that this was something run by the NHS through the specialist clinics - in which case while it might be useful - I wonder if they can carry the cost burden and indeed if patients will actually use it should such a thing become a reality. I need to take a longer look. Those were just my initial thoughts. Thanks though Simon. Interesting - I mean something needs to be done to bring a 'trip to the doctors' for chronically ill into the 21st century :)
     
  9. Simon

    Simon

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    Yes, 21st century approach to 'seeing' the doc would be good.

    I'm pretty sure any cost will be borne by the NHS, not the patient, though patients will need internet access. And the purpose of the trial is to find out if ME patients will use the software and find it helpful. Much of that will probably depend on how much therapy/care they are getting in the first place. If you aren't getting much treatment then there won't be much benefit from any software. I think it was originally developed to help teens getting intensive therapy (cancer?).

    But the idea isn't illness-specific, and if patients find it helpful the that's a good thing. My guess is there will have to be a big advantage to justify the costs.
     
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  10. Bob

    Bob

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    Yes, if you've got a bad doctor and a medical service that disregards your needs, then I can't see how a software service like this will be much help. Also, at least one of the centres where it is being trialled (Bristol) is a well known cognitive-behavioural stronghold. The software can't invent a decent NHS service. But I haven't read through all the info, so I'm not yet sure how it will work.
     
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