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

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).

 

If he’s Greek it’s allowed.

 

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

 

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.

 

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.

 

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.

 

But but but there’s an app!

 

and in the darkness bind them

 

Or, as Gladwell is involved and he believes in "pacing up", they tell you to "pace and increase your activity over time".

 

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.

 

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

 

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?

 

Hopefully people who try out this app can give feedback not only to the MEA but also leave reviews on the app store/Google play store.