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

Utsikt said:
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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So in order to generate patient-reported Outcome Measures, you need a service, a clinic or what have you, to treat the ill people. Then you ask those people after treatment, about the outcomes.

To make sure your outcomes are uniform, you develop a toolkit, a standards of treatments, whatever buzzword you want to call it, in order that the staff ask the same questions at the start and and of treatments. So you can track an outcome.

Tyson, Gladwell etc got a grant from the MEA to develop a uniform ME toolkit which will generate these patient-reported outcomes, and that data set can also apparently fill a data gap which NICE identified. The NHS will also be using the outcomes to report on how amazing its ME services are.

The toolkit + PROMS are going to be launched on the Elaros new OH app which is in beta-testing. This was discussed in February at a conference Elaros hosted about digital health something something which the MEA attended with BACME.


The app contains the PROMS which the MEA grant funded. Their sticky fingers are all over this whether they like it or not. But they’re not endorsing it!!! But it is their work, which they funded, that is a key part of the app.
 
PROMS are outcomes, I think that’s what is confusing. How can outcomes be a toolkit? It’s putting the cart before the horse, is the English expression. They wanted to measure outcomes so they designed a load of questionnaires to be used as a “toolkit” for healthcare providers, which, when used on patients, cause them to generate outcomes.

It’s ok though, Pete Gladwell is an expert and good guy, and Tyson has ME so don’t question them! They’re trying to help us (despite how mean we are).
 
Hypothetically I wouldn't have a problem with some form of functional outcome measurement (alongside objective measuring like hrv) to hold services accountable for helping people. I deteriorated badly on my local services watch and that should have been captured and wasn't.

But funcap exists already and I tried the Tyson prom and it was confusing as ****. And the mode of implementation into an impersonal app feels like the whole concept has been subverted to erode services and avoid delivering meaningful care to patients.

Edit - typos
 
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MrMagoo said:
The app contains the PROMS which the MEA grant funded. Their sticky fingers are all over this whether they like it or not. But they’re not endorsing it!!! But it is their work, which they funded, that is a key part of the app.
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Ah, that’s pretty bad.
MrMagoo said:
PROMS are outcomes, I think that’s what is confusing. How can outcomes be a toolkit?
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I don’t understand this either. It seems to me like they have taken the «tool» in «toolkit» to mean «anything a healthcare worker uses for any purpose». When «toolkit» actually means «a bundling of educational material for healthcare workers».

As an example, our factsheets could have been part of a toolkit for ME/CFS.
 
Utsikt said:
Ah, that’s pretty bad.

I don’t understand this either. It seems to me like they have taken the «tool» in «toolkit» to mean «anything a healthcare worker uses for any purpose». When «toolkit» actually means «a bundling of educational material for healthcare workers».

As an example, our factsheets could have been part of a toolkit for ME/CFS.
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So you can read what they created on the Proms thread, it’s a lot of questions. Over 90, some of the 5 questionnaires.

The Healthcare person asks the patient to fill it out, this helps the Healthcare worker understand the issues and where they can help (!) because they will probably be an Occupational Therapist. Basically they read it then tell you to pace. Then 3 months after, you fill out something to say how great it’s going. Then we have a lot of outcomes saying how great it’s going.

Or fill it out on the app. Did you know the app also allows you to check in with a clinician and complete tasks? It has an area about returning to work, too.
 
MrMagoo said:
Tyson, Gladwell etc got a grant from the MEA to develop a uniform ME toolkit which will generate these patient-reported outcomes, and that data set can also apparently fill a data gap which NICE identified.
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And it's not how any health professional, in any discipline, actually works. That's what astounds me.

Long questionnaires are not only ridiculously unworkable, they won't tell the clinician the important things they need to know about that individual, or (even more importantly) what the person most wants to tell them.

Competent clinicians already know how to get the information they need. They use open questions and observation. I hope there'll be plenty pointing that out.
 
Kitty said:
And it's not how any health professional, in any discipline, actually works. That's what astounds me.

Long questionnaires are not only ridiculously unworkable, they won't tell the clinician the important things they need to know about that individual, or (even more importantly) what the person most wants to tell them.

Competent clinicians already know how to get the information they need. They use open questions and observation. I hope there'll be plenty pointing that out.
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But but but there’s an app!
 
From a Jul 2024 post - relevant to the staffing of Elaros and funding of the app project:
New-onset chronic musculoskeletal pain following COVID-19 infection fulfil the Fibromyalgia clinical syndrome criteria, 2024, Omar Khoja et al
Hutan said:
Senior author is Manoj Sivan. He's recently been the senior author on a number of papers of interest to us. His background is in rehabilitation medicine:

Manoj graduated in Medicine (MBBS) in 1999. After junior medical and surgical training in Cardiff, Reading, Oxford, Leicester and Cambridge, he took up UK's first academic registrar training post in Rehabilitation Medicine (NIHR Academic Clinical Fellow) in Leeds in 2007. He completed his MD (Research) in rehabilitation robotic technology, and the work was awarded two prestigious prizes in 2014 (European Academy of Rehabilitation Medicine (EARM) and Philip Nichols). He then worked as a consultant at Salford Royal Hospital from 2012 to 2017. From 2017-2024, he worked as Associate Clinical Professor at the University of Leeds & NHS consultant at Leeds Hospitals and an honorary Senior Lecturer at the University of Manchester. He was promoted to Clinical Professor at the University of Leeds & NHS consultant at Leeds Hospitals in 2024.
He was appointed President of the British Society of Physical and Rehabilitation Medicine BSPRM (https://www.bsprm.org.uk/) in Nov 2022.

He is the Editor-in-Chief of the SAGE journal Advances in Rehabilitation Science and Practice (https://journals.sagepub.com/home/rpo) and the Oxford Handbook for Rehabilitation Medicine (https://academic.oup.com/book/29871)

He has served as an advisor for the World Health Organisation (WHO) Europe – Disability and Rehabilitation during the pandemic.

Research interests: Rehabilitation technology; Pain Medicine; Autonomic Medicine; Musculoskeletal and Sport and Exercise Medicine; Neurological Rehabilitation; Diagnostic and Interventional Ultrasound; Measurement of Health Outcomes
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He's recently got funding for a project on
Evaluation of outcomes from NHS England Long COVID services using ELAROS digital PROM data
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It seems like there has been a takeover of the MEA by supporters of the BACME, rehabilitation, pacing-up approach, led by Sarah Tyson and Pete Gladwell as the 'professionals' and probably instigated by an unholy alliance of the former MEA leader Neil Riley, who left following protests in December and Russell Fleming who has worked his way up in the MEA from part time media person to key project manager and has his fingers in every pie, including representing the MEA on the government consultation and running the pilot local provision schemes.

I get the impression Charles Shepherd has been sidelined and has no say on the direction they are taking the MEA.
It's all deeply disturbing and making me feel despair.

I don't get the impression Riley, Fleming, Tyson or Gladwell have any idea what very severe ME is and how harmful the whole rehab, pacing up, baselines and goal setting approach is, nor how scientifically ignorant BACME's so called science is. I had some correspondence with Pete Gladwell following our criticism of his 'care plan' document briefly promoted by AfME. He was very polite, but didn't accept a single point I made. He is completely wedded to the rehab, baselines, pacing up approach and insists, wrongly, that it's NICE compliant.

It particularly disturbs me that Tyson, Fleming and Riley are all pwME who either have never experienced severe ME or have improved significantly and attribute that improvement to their own efforts, determination etc., and assume the same applies to everyone, and the BACME people involved only see mild and moderate pwME and don't do follow up to see the harm their pacing up approach causes for some.

Edit, this post may not seem on topic. It's meant as a response to CS saying on FB that the MEA doesn't endorse the app, while at the same time the Tyson, Gladwell, Fleming clinical toolkit and PROMS project seems to be working hand in glove with the app people in the name of the MEA. It makes no sense.
 
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I would imagine, although I may be wrong, that people will find the app completely useless, since the best it can do is put people in touch with services that do not function and otherwise provide an echo chamber for people who no longer need it (like recovery Norge).

Fortunately, we have progress being made in a very different direction by AfME along with the Edinburgh team and others.
 
Trish said:
It seems like there has been a takeover of the MEA by supporters of the BACME, rehabilitation, pacing-up approach, led by Sarah Tyson and Pete Gladwell as the 'professionals' and probably instigated by an unholy alliance of the former MEA leader Neil Riley, who left following protests in December and Russell Fleming who has worked his way up in the MEA from part time media person to key project manager and has his fingers in every pie, including representing the MEA on the government consultation and running the pilot local provision schemes.

I get the impression Charles Shepherd has been sidelined and has no say on the direction they are taking the MEA.
It's all deeply disturbing and making me feel despair.

I don't get the impression Riley, Fleming, Tyson or Gladwell have any idea what very severe ME is and how harmful the whole rehab, pacing up, baselines and goal setting approach is, nor how scientifically ignorant BACME's so called science is. I had some correspondence with Pete Gladwell following our criticism of his 'care plan' document briefly promoted by AfME. He was very polite, but didn't accept a single point I made. He is completely wedded to the rehab, baselines, pacing up approach and insists, wrongly, that it's NICE compliant.

It particularly disturbs me that Tyson, Fleming and Riley are all pwME who either have never experienced severe ME or have improved significantly and attribute that improvement to their own efforts, determination etc., and assume the same applies to everyone, and the BACME people involved only see mild and moderate pwME and don't do follow up to see the harm their pacing up approach causes for some.

Edit, this post may not seem on topic. It's meant as a response to CS saying on FB that the MEA doesn't endorse the app, while at the same time the Tyson, Gladwell, Fleming clinical toolkit and PROMS project seems to be working hand in glove with the app people in the name of the MEA. It makes no sense.
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Thank you for this post @Trish . You have joined a lot of dots that I had spotted and was struggling to make sense of.

This is extremely concerning indeed.

I also fear that any concerns raised will be attributed to us being "anti-recovery activists" and dismissed.

Edited for spelling errors
 
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I have explored a bit more. I have signed up for the beta testing and asked some questions.

I then looked on the android app store and found the Open-OH app is there already and I have downloaded it.

I have read some of the resources provided for patients.

The section on Post viral fatigue is OK in parts, with a fair description of PEM, though it refers to it as increased fatigue before adding other symptoms.

The sections on managing PVFS are OK on the surface, saying things like pacing that balances activity and rest with the aim of avoiding PEM.

But the parts about pacing are heavily based on the whole boom and bust with bust leading to deconditioning model. The strategy for pacing is heavily dependent on detailed activity and symptom diaries, goals and plans, baselines, and once stable for a week, starting to increase activity by up to 20% a week. There is no warning of the risks of worsening by keeping on trying to push the envelope after every stable week. Rests are advised, but contradicted by insisting they must not last more than 30 minutes. Swapping between activities is advised, without clear warning of the cumulative effects. Nor is there any recognition that real life for most people doesn't allow the sort of program they propose.

The section on ME/CFS looks like it's copied straight from the BACME website, and is acknowleged to be so. I haven't read it all.
 
Trish said:
But the parts about pacing are heavily based on the whole boom and bust with bust leading to deconditioning model. The strategy for pacing is heavily dependent on detailed activity and symptom diaries, goals and plans, baselines, and once stable for a week, starting to increase activity by up to 20% a week. There is no warning of the risks of worsening by keeping on trying to push the envelope after every stable week. Rests are advised, but contradicted by insisting they must not last more than 30 minutes. Swapping between activities is advised, without clear warning of the cumulative effects. Nor is there any recognition that real life for most people doesn't allow the sort of program they propose.
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Thanks for looking into it, Trish.

So as suspected, it's created by someone who doesn't know the first thing about ME/CFS.

I'd be interested to know if there is another medical condition that would be managed like this. Never mind whether it's useful or not—would a doctor working in any specialism suggest patients record detailed diaries, goals, plans and baselines?
 
There's a section called My Journey. It has 3 PROMS and they say they will be adding more, so presumably this is where the Tyson PROMs are intended to be added. I can't wait..

At the moment there are the following 3:

C19-YRSm
Covid-19 Yorkshire Rehablitation Scale, which we have discussed.
It's a symptom severity scale for 15 symptoms specifically for people with Long Covid.

Chalder Fatigue Scale
Oh dear.
I filled it in, it scored me 24/27, which is interesting because by my count I scored 24/33.

WPI-SS
The Fibromyalgia Widespread Pain index
Lists parts of the body, select the ones where you experienced pain in the last week
General questions about fatigue and brain fog
Long list of symptoms to select from.
____________

There is a diary section where you can choose any of the following to record as and when you choose to:
activities, sleep, mood, heart rate, blood pressure, symptoms and symptom severity, meals, appointments and notes from appointments.
___________-

You can also provide beta testing feedback.

When I have the energy, I'll suggest they remove the chalder scale and use FUNCAP instead.
 
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