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

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 !"

[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."

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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About us - Open-OH Elaros

Meet our Advisory Board

Our Scientific Advisory Board includes leading clinical experts and patient representatives

Dr Nikki Cordell
Cordell Health


Nikki is an accredited specialist in Occupational Medicine, and a Fellow of the Faculty of Occupational Medicine (FFOM), with over 15 years experience in delivering occupational health services, first within the military and subsequently in the private and third sector. She has a keen interest in medical education and having gained an MSc in Medical Education from the University of Cardiff, she has been very involved in the professional development of clinicians providing specialist occupational health services.

She is currently undertaking a PhD working with Professor Helen Dawes, in the Faculty of Health and Life Sciences at Oxford Brookes University. Her research is focused on the factors influencing the ability to work for employees with a long-term health problem or disability. Other research interests include evidence in supporting those with a disability in employment, the role of employees’ health and wellbeing in organisational performance, and evidence-based assessment of fitness for work.

Nikki has worked in the military developing regionally based multi-disciplinary occupational health services. She is dedicated to raising the standards in occupational health provision and believes in a multifaceted service, focused on prevention and early intervention is the future.

As CEO of Cordell Health, she has overall responsibility for strategy, business performance and organisation of service delivery. I lead on providing management consultancy advice to organisations which includes assessing the requirement, clinical specification, procurement and assurance of occupational healthcare services. She also supports the Medical Director with complex case management referrals.

“Being a social enterprise is very important to me, I want us to make a positive difference in the workplace and my vision is to change the focus from disability to ability.

Professor Ruairidh Milne
Long Covid PPI Lead


Ruairidh Milne has had Long Covid since March 2020. He is Co-Lead for Patient and Public Involvement for the NIHR-funded Locomotion study. He is a retired public health doctor and academic, whose most recent work was with the National Institute for Health and Care Research.

Professor Helen Dawes
University of Exeter


Helen Dawes is Professor of Clinical Rehabilitation in the College of Medicine and Health. She is themelead for rehabilitation in the NIHR Exeter BRC and co-director of health technologies at Exeter network and business engagement and innovation.

Helen is a clinical academic physiotherapist working in multidisciplinary research across ages, conditions, and health and care settings. Her research focus is on rehabilitation innovations to enable people living with conditions affecting their movement to be able to move well. She collaborates with key colleagues in the UK across the NHS and Universities, and internationally with Shanghai Jiao Tong Affiliated Sixth People’s Hospital, Sao Paulo, Drexel, Aarhus, Monash, and Oslo Universities. Her research involves working closely, with industry, clinicians, and the public, to develop, evaluate and translate to clinical practice transformative innovation.

Prof. Manoj Sivan
WHO, University of Leeds and Leeds NHS Trusts


Professor Manoj Sivan MD FRCP (Ed) is an Associate Clinical Professor and Honorary Consultant in Rehabilitation Medicine (RM) with University of Leeds and Leeds NHS Trusts. He led UK’s first study on Covid-19 long term symptoms (long Covid) published in July 2020 that led to the setting up of UK’s first Long Covid service in Leeds in Sept 2020. He also led the development of the C19-YRS (Yorkshire Rehabilitation Scale), a NHS England and NICE recommended tool for assessment and monitoring of the condition. His current research interests are developing rehabilitation interventions for Long Covid symptoms and outcome measurement of the condition.

His previous research on home-based rehabilitation robots has won several awards including the European Academy of RM prize and the UK Philips Nichols prize. His research has received grants from NIHR, MRC, EPSRC, ISRT, Research England and RCP.

He is the Editor-in-Chief of the Oxford Handbook of Rehabilitation Medicine. He is also the President-Elect for the British Society of Rehabilitation Medicine (BSRM).

Manoj has been instrumental in advising on the development of the digital C19-YRS platform and supporting it’s roll-out, and will continue to bring his expertise and experience into this project.

Jeremy Gee
Community Advanced Practitioner | Airedale NHS Foundation Trust


Jeremy qualified as a Physiotherapist in 2009 working rotationally across a wide variety of key areas within Airedale NHS Foundation Trust before focussing mainly on rehabilitation of older adults both in inpatient and community settings. After completing a Masters in Advanced Practice at the University of Leeds in 2019 Jeremy has expanded his holistic management of people within the community setting.

The Covid-19 pandemic has raised significant challenges and the need for a co-ordinated rehabilitation response. With a strong interest in rehabilitation, multi-disciplinary working and a passion for holistic care, working towards a whole system approach to Covid-19 has been a natural progression from Jeremy’s experience so far.

I’m wondering why Professor Danny Altmann isn’t also on the advisory board. Maybe he was invited but couldn’t fit it in with his other commitments which he outlines in his presentation in May 2025 to the APPG on ME

Minutes for APPG meeting: 14 May - All-Party Parliamentary Group on ME
 
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.



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.


I just found this case study titled


Don't quote from it, it needs prior written consent - protecting commercial interests I suspect.
 
It isn't a scientific advisory board. It is a clinical rehab advisory board, whatever it may be called.
Yes, that's clear. It's a mix of rehab specialists and occupational health specialists, which matches the content and purpose of the app and its funding.

It's a mix of rehab stuff and stuff about employment and getting people back to work etc. Funded by DHSC and DWP, app name open-OH with our assumption that the OH refers to occupational health. It also fits the government policy of trying to get sick people back to work.

The more I see of this, the more both useless and inappropriate the whole app project seems. It's not about people's health needs, it's about getting people off benefits. And it's about fobbing us off yet again with useless rehab clinics with apps to replace longer term care.
 
Thank you Trish. This is succinct.

@Trish wrote:
"Yes, that's clear. It's a mix of rehab specialists and occupational health specialists, which matches the content and purpose of the app and its funding.

It's a mix of rehab stuff and stuff about employment and getting people back to work etc. Funded by DHSC and DWP, app name open-OH with our assumption that the OH refers to occupational health. It also fits the government policy of trying to get sick people back to work.

The more I see of this, the more both useless and inappropriate the whole app project seems. It's not about people's health needs, it's about getting people off benefits. And it's about fobbing us off yet again with useless rehab clinics with apps to replace longer term care."

.
 
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I just found this case study titled


Don't quote from it, it needs prior written consent - protecting commercial interests I suspect.
Marking their own homework...?
 
Thank you Trish. This is succinct.

@Trish wrote:
"Yes, that's clear. It's a mix of rehab specialists and occupational health specialists, which matches the content and purpose of the app and its funding.

It's a mix of rehab stuff and stuff about employment and getting people back to work etc. Funded by DHSC and DWP, app name open-OH with our assumption that the OH refers to occupational health. It also fits the government policy of trying to get sick people back to work.

The more I see of this, the more both useless and inappropriate the whole app project seems. It's not about people's health needs, it's about getting people off benefits. And it's about fobbing us off yet again with useless rehab clinics with apps to replace longer term care."

.
Is thee a name for the “whataboutery” involved in the constant, constant rehash and re-writing of inappropriate and harmful rehab approach? It’s draining. Always having to read through projects, papers, app proposals, testing, questionnaires etc which after you distill all the information down to its meaning, the meaning is “have you tried moving more, it’ll make you better” when we know it doesn’t.
 
I've been looking into the funding for this prompted by Trish's comments earlier.


The link in that page takes you to this govn’t page. £1.5 Million investment to improve in-work health services as part of government drive to tackle inactivity - GOV.UK 14 April 2024

  • Five projects to share £1.5 million funding to boost occupational health services for small and medium-sized businesses.
  • Artificial intelligence and new technology at heart of revolution including expansion of remote services, digital health hubs, and Long Covid support.
  • New support comes as inactivity due to long term sickness increases by 735,000 since the pandemic
  • Occupational health reforms part of Government’s plan reduce economic inactivity by helping thousands more stay and succeed in work
Five projects will receive a share of this funding to develop new and innovative ways to improve occupational health services which will eventually be scaled-up and made available to small businesses to help them support their employees to stay in work.

One successful company, Kinseed Limited, is developing a revolutionary cloud-based occupational health platform aimed at offering employers’ powerful new tools to help maintain and improve employee health and wellbeing.

Their new service “MediWork” is breaking ground with AI and uses data to monitor individual health trends and identifies early warning signs of ill health. It will tailor suggestions to improve workplace wellbeing, and help clinicians do their job more effectively and quickly than before.

The new technology developed through the Fund will help unlock opportunities to improve people’s work and wellbeing as the government boosts health and employment support to drive down inactivity.

Minister for Employment, Jo Churchill MP, said:

Time off work due to sickness costs British business £100 billion every year. The innovative solutions developed through this funding will benefit businesses as we harness AI and technology to support a healthier and more productive workforce.
Delivering through our Back to Work Plan and Occupational Health Taskforce, we are driving down inactivity and helping people reach their potential both in work and their daily lives.
Pal Bhusate, Chief Executive Officer at Kinseed Limited, added:

We’re very excited to be working with cutting edge technology in AI and Cloud systems to keep people healthy and safe at work - and this fund has been absolutely critical in helping us do precisely that.
Supporting small and medium businesses in these areas is the only way that industries like ours can rapidly adapt to and get value from these incredible developments - and it’s brilliant to see such positive and active support from government to encourage that agility and innovation.
Before the pandemic, inactivity in the UK had fallen by over 850,000 and while it currently remains lower than G7, EU and OECD averages, many people including those from younger generations are out of work due to long term sickness, in large part been driven by mental health conditions like depression and anxiety.

With long-term sickness now the main reason people of working-age give for being economically inactive, occupational health services can help employers provide in work support to manage their employees’ health conditions and reduce the number of those becoming inactive.

However, only 45% of workers in Britain have access to some form of occupational health, with an estimated 1.8 million workers reporting work-related ill health in 2022/23. That’s why the government is working with companies to develop new technology to better understand employee health, provide tailored support and tackle long-term sickness to help people stay and succeed in work.

We’ve introduced reforms to address this through the government’s new WorkWell service and £2.3 billion in extra mental health funding a year in England to ensure people can reach their potential and get the support they need to reap the financial, mental and physical benefits being in work has to offer.

The Occupational Health Innovation Fund and new Occupational Health Taskforce builds on this, and the government’s £2.5bn Back to Work Plan will support over a million people including those with mental health conditions to break down barriers to finding and staying work through the use of NHS Talking Therapies, Individual Placement and Support, Restart and Universal Support programmes.

Minister for Health and Social Care, Helen Whately MP, commented:

Every year many thousands of people take time off work - or leave work altogether - because of ill health. But at the same time, there are millions of people who are working with health conditions, often supported by occupational health services.
We want more people to be able to benefit from occupational health support, particularly people working in smaller businesses or those who are self-employed. That’s why we’re investing in these innovative approaches to occupational health. This sits alongside our plans for WorkWell which will help people access support to stay in work, and our fit note reforms.
A healthy economy depends on a healthy workforce. Making sure people can be healthy and stay in work is crucial for individuals, businesses and our country as a whole.
Another organisation, Armour Labs Limited, is building a digital health hub for SME’s and the self-employed to reduce the cost of access to occupational health services.

They will partner with digital healthcare providers and merge these services into health plans for UK employees which they can access through an online portal and future mobile app to help make Occupational Health support more accessible and efficient than ever.

Aleezay Malik, Chief Executive Officer of Armour Labs Ltd, added:

Armour Labs is building the digital marketplace for employers to procure and deploy Occupational Health services that cater to their workforce’s diverse and individual needs.
Through the support of this Fund, we are now in the process of testing and rolling out our solution in the market which we expect will make Occupational Health not only more accessible and affordable for businesses, but also reduce ill health related absenteeism by 30%.
In February, the government launched a new Occupational Health Taskforce, led by Dame Carol Black, to improve employer awareness of the benefits of Occupational Health in the workplace.

The Taskforce is developing an occupational health framework to help businesses prevent sickness-related job loss and support employees returning to work after illness. The voluntary framework is expected to be published this summer.

Additional Information​

  • Recognising the need for transformative changes in the OH market, the DWP/DHSC Joint Work and Health Directorate launched the dedicated ‘Fund to Stimulate Innovation in Occupational Health’ in January 2023 to stimulate innovation and improve service delivery models through the effective use of technology.
  • Phase One provided £1 million between ten organisations to develop new technology to improve health outcomes for employees of small-medium enterprises (SMEs).
  • After the ten providers from Phase One presented the tools they had developed. These were scored, and five providers have passed to Phase Two where another £1.5m in funding is being provided.
  • Wellics Ltd, Kinseed Limited, Elaros 24/7 Limited, Latus Health Ltd and Armour Labs Ltd are all participating in the latest stage of the Innovation Fund.
  • The Occupational Health Taskforce will produce a voluntary occupational health framework for businesses - which will include setting out minimum levels of occupational health needed to stop sickness-related job losses and help businesses better support those returning to work after a period of ill-health.

My gut was telling me something was 'off' about the time lag between the announcement in the Commons about the delivery plan and public consultation on 12 May 2022 and when it eventually arrived in September 2023 - 18 months. I've been digging ever since the public consultation. Now I know.
 
Eleros essentially operational during the NHSE Covid flush of money and LC Serviced via MEA Sarah Tyson PROMs etc, (then leads to Delivery plan and BACME involvement) ...have been heavily 'marketing' their wares, talking up their product and expertise and then transposing across to ME and CFS, as the covid acute need reduces...

and every one then queues up for the so called ME and CFS Services.. within the new shiny Integration' 10 yr Plan, Digital AI and rehab agenda.
NICE!
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