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

JemPD said:
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
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We suspect it’s nefarious.

I think the facts are more like the DWP put some funding towards an NHS digital initiative which has come up with the app which is also relying on Tyson & Gladwell’s PROMs and the NHS will be maybe using the app when it launches.

The concern is what the NHS might do with the data, would it share it with DWP? There is a “back to work” aspect to the app.

For the lay person like myself, I would say it stinks and they’re all in it together but I can’t factually argue why beyond “potential for nefarious in future”
 
Lou B Lou said:
Being 'inside the tent' for the MEA has always meant sitting around the campfire singing limp and only vaguely encouraging songs but never making any kind of effective challenge. This is especially true now with PROMS because it turns out the MEA actually funded the entire campsite.
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They are starting to become the tent, that’s the concern
 
Suffolkres said:
:mad::bawling::oops::wtf::(:nailbiting:

I am so cross.......What are MEA up to...?
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In confidence not for sharing please....

Already we in Suffolk have been in contact this week with Charles over real concerns about MEA's involvement since May 2024.

We want a press release to properly state the facts of our service development situation.

We want credit given where credit is due.....
Ie those who delivered... 2022 -early 2024, as opposed to those that tried to prevent!

We have a precise audit trail, questions made in public at our ICB Meetings, documentary evidence to back up our complaints about our 2 years of work, at risk, with attempted subversion by new Project Team it would appear assisted by MEA 'personnel.'

Now it appears MEA are in bed with BACME..?, FND ?, rehabilitation? , private sector providers and a questionable local manager, who spent months taking apart good work done under proper governance and co production.

In January I attended an ICB Board meeting with a request for an Addendum to the November 2024 Board Minutes.

It's on utube in public domain still!

I wanted a correction regarding Service Spec changes May to October/November 2024 which included incorrect inclusion of rehabilitation.

To date this request has not been answered.

I have increasing concerns that the Proms stuff has been used to by MEA people (not Charles) in our service development at a time we were 'excluded' and were unable to defend our work.

I am very, very unhappy.
 
JemPD said:
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???
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It might be about two things.

One is about the NHS finding ways to make services for ME/CFS, long Covid, and (possibly?) FND and psychological therapies look good by designing carefully constructed questionnaires for patient feedback.

The other is about policy aims. The government's been putting a lot of emphasis on getting disabled people back to work, and it's possible NHS senior management have seen that it won't do their funding case any harm if they find ways to show they're offering treatments that support this.

I suspect a lot of patients will steer well clear of it anyway.
 
I'm sorry to hear about all this, @Suffolkres. I don't know the background, but it must be soul destroying to fight and work for a decent provision, literally for years, and then have people who're supposed to be on your side undermining your efforts.
 
ELAROS have replied to the comments on the MEA Facebook post:

[MEDIA=facebook]1163775829109781[/MEDIA]

And directly to one person's concerns, saying that the DWP will have no access to data, they are merely a funder..

MEA, particularly Dr S, are very insistent that MEA are not endorsing this app, merely making people aware.

Why? And why are DWP funding this app? Have they ever funded any other health issue other than the PACE trial?

And how does this connect to the PROMS toolkit (I still don't understand how PROMS can also be a toolkit)

And why have MEA got anything to do with either of these wildly unsuitable projects?

Did they learn nothing from the AGM issues and the multiple complaints from pwME last year about the choices they were making? I have very serious concerns about the directions they are taking, particularly in light of things raised in recent posts on this thread.
 
Cinders66 said:
I don’t know if this was seen?

ELAROS Hosts Webinar on Digitally Supporting ME/CFS and Long COVID Services - C19-YRS
https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/

On Wednesday, 5th February, ELAROS hosted a webinar on Digitally Supporting ME/CFS and Long COVID Services, bringing together key experts at a crucial time for the ME/CFS and Long COVID communities.
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I can’t do the quote thing.

Tyson and Gladwell’s PROMS is now being called the MEA’s clinical toolkit which will be accessible through Elaros’ new OH app
as per link/screenshot

IMG_4067.jpeg

the OH app beta-testing has its own thread link on last page
bobbler said:
Post copied and discussion moved from this thread

https://www.facebook.com/1000643212...YGsqFPRriKhEGXVfJK97gp7mwvFEtsTKmXkl/?app=fbl

I’m posting this here specifically in the context that one comment to this post on this app (which involves DHSC and DWP) suggests in the past MEA were waiting until PROMS reports to comment on the app.

I haven’t checked if there is a page about this app/MEA post in the more general elsewhere as I imagine that itself is worth one on its own thread?

quote from the fb post:
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Never like to see the words "clinical" and "toolkit" in the same sentence.

It tends to indicate that people have little idea what's actually useful, and/or are willing to deploy any buzzword in any context if it means they'll still be in a job in 12 months.
 
JellyBabyKid said:
Why? And why are DWP funding this app?
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Indeed.

JellyBabyKid said:
And how does this connect to the PROMS toolkit (I still don't understand how PROMS can also be a toolkit)
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I assume no one really knows what those things are. They're words people use to make it look as if they're up to date and in the know.

Doesn't always work; my friend's dad thinks the aubergine emoji is to let people know he's cooking moussaka.

JellyBabyKid said:
And why have MEA got anything to do with either of these wildly unsuitable projects?
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I just...despair.
 
So the MEA are saying that they are not promoting the app, they are asking people to «beta test» the app, which they take to mean «provide feedback about the app».

It seems to me like the MEA are clueless about what a layperson reads when someone says «would you like to beta test this app». To most people, that means «would you like to try out this app», and that question in itself is usually taken as an endorsement because it’s language that you frequently see in advertisement and sales. «Would you like to try out X» is just a polite «offer» for the instruction «please do this».

In my opinion, the MEA have cause most of this confusion themselves because they used tech lingo to laypeople.

I also think the MEA should have tested the app themselves, determined that it isn’t fit for purpose, and made that exceedingly clear to the developers, instead of whatever this is.
 
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