UK NHS: beta testing Open-OH app for Long Covid and ME/CFS

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:

 

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!

 

There’s a lot going on here.
Screenshots of the app project

 

I feel the value of apps of any kind is greatly overstated. Apps are mostly just superflous data and busy work (that reduces our spoons for other tasks). I know some people feel differently, but...

 

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)

 

From Open-OH website


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

 

Comment re: Proms

 

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.

 

The MEA is making itself increasingly irrelevant.
Who knows what will happen when Charles Shepard retires .

 

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.

 

It is deeply disturbing.

 

There is an option to trial the app.
Maybe some members should investigate?
It certainly deserves a thread
https://open-oh.com/

 

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.

 

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.

 

It would be great if some non-disabled allies could investigate

 

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.

 

It looks to be part of/an offshoot of this, The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale

 

https://innovationlibrarynenc.org.uk/result/elaros-tracking-long-covid-app/

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