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

John_Lobb said:
Admin Open-OH: Early Adopters Facebook - 14/08/2025

"Feedback requested on our resources!

Hi @everyone,

Over the past few months, we have been discussing our various resources with members of this group and our user co-design board to consider which resources are most appropriate for different users of the app.

At the moment, our Beta version of the Open-OH app provides various resources from NHS specialist services, charities, and organisations like the World Health Organisation who have produced resources for Long Covid, ME/CFS, Fibromyalgia and available support in the workplace.

We recognise there are issues and concerns with providing certain content about specific conditions or symptoms to those that don’t experience them. Additionally, we know that showing workplace-related content to those that are out of work or cannot work can feel irrelevant, so we have been working on some proposed solutions and fixes.

An early solution would be to hide condition-specific, symptom-specific, or workplace-related content from those that self-select a different condition or state that they are not in employment. For example, this would immediately hide any clinical resources designed for Long Covid patients from people with ME and Fibromyalgia.

This still leaves the task of reviewing which resources and sources of information our community think are genuinely helpful to them. Until now, we have mostly looked towards our UK clinical network given our 10+ year relationship with the NHS, but many of our members have highlighted some great resources from US organisations like Bateman Horne and Mt Sinai.

To facilitate this community review process, one colleague suggested implementing a ’thumbs up or down’ feature for users to rate how useful they find each bit of content, which would allow us to evaluate what our community think are the most helpful and relevant to them and adapt this over time.

Lastly, for the time being we have decided to remove the resource chapter on ‘Physical Activity and Exercise’ from the app (that brought together content from 2 specialist NHS Long Covid services) until we have updated the editorial/filtering process and have a way to ensure it won't be shown to users with PEM.

We value everyone’s opinions in this group so please feel free to comment below or reach out to the team at open-oh@elaros.com !"
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[side note: I didn’t think you used ampersands on Facebook?]

The first point to make, as others have done is - rehabilitation from what, our beliefs and fears causing deconditioning and sedentary behaviour?

ELAROS vaguely refer to the fact they are following WHO guidance. So let’s look at that guidance.

Rehabilitation 2030 based on a Resolution endorsed in May 2023 and

Physical activity 26 June 2024

However, WHO also issue guidance on disease categorization including WHO ICD 8E49. For simplicity, here's how MEResearch UK explain it.

ICD Classification

It was not until patients started challenging ELAROS about what they were including in this NHS app being run by a private company that prompted the above statement a week ago.

Also from the WHO is this information on patient safety

Patient safety

Overview

“First, do no harm” is the most fundamental principle of any health care service. No one should be harmed in health care; however, there is compelling evidence of a huge burden of avoidable patient harm globally across the developed and developing health care systems. This has major human, moral, ethical and financial implications.

Patient safety is defined as “the absence of preventable harm to a patient and reduction of risk of unnecessary harm associated with health care to an acceptable minimum." Within the broader health system context, it is “a framework of organized activities that creates cultures, processes, procedures, behaviours, technologies and environments in health care that consistently and sustainably lower risks, reduce the occurrence of avoidable harm, make error less likely and reduce impact of harm when it does occur."
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Patients are not supposed to be the main and only gatekeepers to ensure that no-one is harmed when exposed to healthcare professional service delivery and others, to ME/CFS. Yet this has been the case for the last 40 years at least and, obviously remains so. This also now applies to Long Covid patients and their families and advocates where PEM is a feature of their illness.

The fact that anyone walking into their GP appointment today and being diagnosed with ME/CFS, Long Covid or any other post viral unknowingly relies on groups of exhausted patients and charities having to continuously monitor what various institutions are doing and challenge them on it where necessary, is a damning indictment of the state.

It is also an inequitable moral burden on already ill patients, their families and their advocates. The systemic nature of this is precisely why two Prevention of Future Deaths Reports have been issued in connection with two ME/CFS patients!

This NHS app is not simply PROMs. Not having been into it and looked but based on the material produced by Elaros, it includes an intention to treat. As it also includes patient’s ability to self-refer, there is a danger it will include patients who have not received a formal diagnosis and therefore suffer from chronic fatigue. Any PROMS data issued as a result will be skewed and unreliable.

The bigger picture:

When in December 2024 was the 2019 Cochrane Larun review republished without change?
 
Excellent.
I have had invites to 'talk' but that would be a wasted opportunity.

I believe S4ME in the form of an expert panel should use this offer as I am a member of S4ME whilst being excluded from my Suffolk Coproduction work for a year and effectively.....

Entirely in the dark as to how this is all being played out, MEA BACME PROMs Eleros.... invite to Forward ME. ..?

...charm offensive with ICBS co MEA Russell and Charlotte in secret with Commissioners and providers. Closed seminars ....

We must push back....with force
 
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