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

Jonathan Edwards said:
Maybe some members should investigate?
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Kitty says:
People who need to claim disability benefits probably won't feel able to.

The DWP is twisted enough to claim that even downloading and setting up an account on an app like this—before you've even recorded any data—shows you have capacity for work or daily living activities.

Also, those "Choose who to share data with" options may be a lot less transparent than the description says. There are often hidden settings in apps that can override the privacy options unless you know how to disable all of them.
 
Jonathan Edwards said:
The emphasis looks very much on physio and rehab with a view to getting people back to work
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Yup. They probably wouldn't bother otherwise.

It would be interesting to know if they're trialling it for people with kidney disease or Addison's or lupus, or whether it's only for Not Trying Hard Enough conditions.

It might be possible to challenge use of it on evidential grounds etc, but I wonder if it would make much difference? They've got as far as beta testing, so they must be fairly committed.
 
Kitty said:
It would be interesting to know if they're trialling it for people with kidney disease or Addison's or lupus, or whether it's only for Not Trying Hard Enough conditions.
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https://innovationlibrarynenc.org.uk/result/elaros-tracking-long-covid-app/

Under 'Plans for the Future / spread and adoption':

In 2025, ELAROS will launch a new long-term condition management platform, Autonom-e, to support a range of different clinical services in the NHS and internationally including Stroke, ME/CFS, Post-Viral Illness, Rheumatology and more, building on the successes of the C19-YRS platform.

Furthermore, in 2025, ELAROS will launch a consumer-facing occupational health app, Open-OH, aimed at supporting many of the 2.8 million people out of work due to long-term sickness relating to Long Covid, ME/CFS, Fibromyalgia, and Mental Health.
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Cinders66 said:
When The ME association surveyed members https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf about what type of care they wanted and who to lead it, an OT got low scores and not in the top 3 for both leading and involvement, whatever the nhs wants to parcel us off with.
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It's a shame they don't ask what people need instead of giving them options they may have no experience with anyway.

I suspect they'd get very different answers about what, given the absence of an effective treatment, would make the most difference.
 
MrMagoo said:
Can we invent a Patient Harms Index? Where we score things on how much damage they cause us?
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that's one thing isn't it. if someone is limiting what is being measured - which is what the intention/history behind changes to using PROMS seems to have been prompted by - it almost feels like some sort of collecting of data, but without the full picture so the measures that perhaps matter to harm are excluded (and issues like 'doubling up' 'therapy' and not counting cognitive tasks like admin and phone calls etc) on someone's very specific terms.

If this is being linked to OH then is it to be used for things like court cases where someone is harmed? - and we have apparently certain 'bits' they've chosen to collect as data then in their app, and the person then has the rest of the picture to try and prove themselves as both relevant/part of that same picture and just as factually collected (eg even if they have another app).

Is it just trying to play the same trick of if someone gets iller because of their working conditions then the app is set up to insinuate that maybe it was instead because they weren't putting in enough hours tapping the app on mindfulness or something unevidenced to make any difference but also not researched for its energy drain and how ill being required to interact with your phone in such a way however many times a day etc.

And who owns the data?

If it does theoretically show that lots of people end up iller because of what they are encouraged to do (which it seems most PROMS specifically avoid being possible because their origin came from the finding that things like SF-36 showed treatments didn't work so they wanted to stop measuring physical function and focus on 'other measures') will that be honestly used to change approaches? Or will patients suffer from it being spun as we seem to be having currently, even after a how many year slog following the research results showing that.

It is all potentially a bit dystopian because as you say if there is no actual medical care being offered (if there were actually something that made rehab sensible because it 'cured' the underlying condition to make it possible, which is up in the air until that point) we've historically seen that for ME/CFS rhetoric is used to cover-up that little exception/issue and infer to 'the public' its fine to rehab untreated people because some people for other conditions that are properly medically treated and signed off as safe are apparently OK with it.

I haven't seen the part where anything that is being offered would be of any actual help to people - but I haven't read through everything it actually is yet. Has anyone else obtained what it thinks it is offering that would actually help patients?
 
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Maybe someone should remind the MEA that under UK laws, tweeting something can make you liable for defamatory statements.

Which means that under the laws, anything you share on social media can be attributed to you, as a statement you’ve made and have to stand behind.

And that the person that first used the «retweets are not endoresments» phrase on Xitter now thinks it’s cringe.
 
I can see no problem if the MEA had flagged it up as an app in development that looks problematic for pwME, and invited feedback. I do have a problem with the MEA encouraging people to test the app, which I understand involves submitting personal data.

Edited to make it clearer the MEA didn't flag it up as problematic.
 
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Trish said:
I can see no problem with the MEA flagging it up as an app in development that looks problematic for pwME, and inviting feedback. I do have a problem with the MEA encouraging people to test the app, which I understand involves submitting personal data.
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I can’t see that they’ve said that it’s problematic, though?
 
bobbler said:
that's one thing isn't it. if someone is limiting what is being measured - which is what the intention/history behind changes to using PROMS seems to have been prompted by - it almost feels like some sort of collecting of data, but without the full picture so the measures that perhaps matter to harm are excluded (and issues like 'doubling up' 'therapy' and not counting cognitive tasks like admin and phone calls etc) on someone's very specific terms.

If this is being linked to OH then is it to be used for things like court cases where someone is harmed? - and we have apparently certain 'bits' they've chosen to collect as data then in their app, and the person then has the rest of the picture to try and prove themselves as both relevant/part of that same picture and just as factually collected (eg even if they have another app).

Is it just trying to play the same trick of if someone gets iller because of their working conditions then the app is set up to insinuate that maybe it was instead because they weren't putting in enough hours tapping the app on mindfulness or something unevidenced to make any difference but also not researched for its energy drain and how ill being required to interact with your phone in such a way however many times a day etc.

And who owns the data?

If it does theoretically show that lots of people end up iller because of what they are encouraged to do (which it seems most PROMS specifically avoid being possible because their origin came from the finding that things like SF-36 showed treatments didn't work so they wanted to stop measuring physical function and focus on 'other measures') will that be honestly used to change approaches? Or will patients suffer from it being spun as we seem to be having currently, even after a how many year slog following the research results showing that.

It is all potentially a bit dystopian because as you say if there is no actual medical care being offered (if there were actually something that made rehab sensible because it 'cured' the underlying condition to make it possible, which is up in the air until that point) we've historically seen that for ME/CFS rhetoric is used to cover-up that little exception/issue and infer to 'the public' its fine to rehab untreated people because some people for other conditions that are properly medically treated and signed off as safe are apparently OK with it.

I haven't seen the part where anything that is being offered would be of any actual help to people - but I haven't read through everything it actually is yet. Has anyone else obtained what it thinks it is offering that would actually help patients?
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It’s like that “amaZen” booth all over again!
We’ve helped you, if you’re still not well then it’s a “you” problem (ignores the oppressive environment the worker is in, because a “solution” has been provided, shifting the problem away and putting it on the individual)
IMG_4050.jpeg
 
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