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

Trish

Trish

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https://www.elaros.com/

ELAROS is a private company that works with the NHS to provide digital apps and websites, including patient apps where they can fill in PROMs, and access to these by clinicians.

Support across a range of services
Choose from a suite of patient-reported outcome measures for a range of long-term conditions, for clinical practice or in research.

Get in touch with your bespoke requests to tailor our system to your needs:
c19-yrs@elaros.com
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The initial aim, I think is for it to be used particularly for Long Covid clinics to track their patients in their rehab clinics.

There is a questionnaire that seems to be at the heart of this called
The Covid-19 Yorkshire Rehabilitation Scale

I have had a look at it, and it seems fairly sensible and easy to fill in, with sections on symptoms, function and general health. Patients can fill it in on the app.

Edit: See next post for research on the scale.
The problems are the same as for all questionnaires - mainly when a set of quite sensible questions is turned into numerical data that can be very misleading, especially if used to justify rehabilitation as effective.
 
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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:
The 'Open-OH' project, funded by SBRI via the Department for Health & Social Care and Department for Work & Pensions, has developed an App aimed at supporting people with Long Covid, ME/CFS, Fibromyalgia and other long-term conditions, taking an occupational health & therapy-led approach.
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bobbler said:
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) suggests in the past MEA were waiting until PROMS reports to comment on the app.

I’m too exhausted to work out the connection there if there’s an obvious one

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?
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It’s ridiculous of them to claim that sharing the app isn’t the same as endorsing it. That is really not how things work!
 
And a bonfire in the comments. Here are a selection of people mainly saying “I don’t want the DWP to have this info/Visible exists, why bother making another app” also a long comment which is very informative about the LC platform already being run and that it’s not taking PEM into account (commenters names redacted by me)

IMG_4046.jpeg IMG_4045.jpeg IMG_4044.jpeg
 
From Open-OH website
IMG_4047.png

For self-management
-use validated tools to assess and monitor your symptoms over time
- access educational resources tailored for your condition
-learn strategies to self manage your symptoms
-share reports with carers and relatives
- access support for managing or returning to work

Together with a clinical team
- share clinical reports with clinicians
- complete tasks set by clinicians
-control what data is shared
- find nearby services and support groups

For research
-find national and international studies
- share your data securely
- opt in and out at any time
-view national trends and research updates
-Engage with a community with Long Covid



I wonder if this should have its own thread
 
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bobbler said:
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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Comment re: Proms
IMG_4048.jpeg
 
"Adjustments by Open-OH:An SBRI follow-on funding to develop an evidence based interventions [sic] for Mental Health."

Anybody need more evidence about what is really happening here?

It is beyond clear that the government still happy to treat ME/CFS, et al, as a psycho-behavioural problem, to be managed as such, and that the Wessely school still dominate government policy advice.

It is just naked cruelty at this point, a giant Fuck You to patients.

The MEA should immediately, completely, publicly, and permanently dissociate themselves from it all.
 
Sean said:
"Adjustments by Open-OH:An SBRI follow-on funding to develop an evidence based interventions [sic] for Mental Health."

Anybody need more evidence about what is really happening here?

It is beyond clear that the government still happy to treat ME/CFS, et al, as a psycho-behavioural problem, to be managed as such, and that the Wessely school still dominate government policy advice.

It is just naked cruelty at this point, a giant Fuck You to patients.

The MEA should immediately, completely, publicly, and permanently dissociate themselves from it all.
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It’s ok they just keep **commenting** that they’re not promoting this, they’re just publicising the opportunity

The MEA seems determined to repeatedly kick itself in the head lately.
 
MEA have never shared or promoted any of the patient campaigns on research funding.
However they feel they must share this, in the month we expect the DHSC to refuse funding for research or better services, a DHSC-funded app substitute& the cheapest form of OT led management - I’m thinking of Esther Crawleys FITNET without as much CBT as treatment claims , for early stage management only via pacing & rehab - when the wider patient community have made it clear they reject the perpetuation of this DIY/Therapy-led model.
 
Jonathan Edwards said:
Maybe some members should investigate?
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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.
 
Looking at the Advisory Board:

Includes two physios, an occupational health physician in charge of a company involved in the workplace, a physician with an interest in dysautonomia currently doing a study on an 8 week course of management funded by MEA, and a retired public health physician involved in an NIHR 'Locomotion' study.

The emphasis looks very much on physio and rehab with a view to getting people back to work but I have not looked at the content.
 
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