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

Trish said:
From earlier on this thread:


I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical practice, research, and support for people with ME/CFS at home from a range of speakers

By ELAROS 24/7 Ltd

Date and time
Wednesday, July 2 · 1 - 3pm GMT+1
Location
Online

About this event
  • Event lasts 2 hours
This webinar is brought to you by ME Association and ELAROS 24/7 LTD and is aimed at clinicians, academics and service providers working in the fields of ME/CFS, Long Covid, and other long-term condition services.

This event will be recorded. Please email c19-yrs@elaros.com for a copy of the recording if you are unable to attend on the day.

Long Covid and ME/CFS share similar characteristics and have a similar impact on an individual’s ability to function normally. Infections are regarded as the triggers to these chronic medical conditions that certain individuals have difficultly recovering from.

In the absence of approved and effective treatments for either condition, management is the main tool we have to work towards a stabilising of symptom frequency and severity and an improvement in an individual’s life quality. It is essential that affected individuals are referred to a multi-disciplinary specialist team who can confirm a diagnosis, provide tailored care and support based on need, and advise on the tools necessary to manage health effectively.

The NICE Guideline (NG206) provides evidence-based clinical recommendations for the diagnosis and management of ME/CFS that can be applied to Long Covid where individuals whose difficulties stem from a Covid-19 infection meet the criteria for ME/CFS. We await final publication of NG188, the clinical guideline for Long Covid, last updated in January 2024.

Integration is being promoted because of a need to retain specialist clinicians and build provision for a larger patient community. We need to meet demand for early and accurate diagnosis and effective management for those with ‘infection associated chronic conditions.’ In areas where there is no ME/CFS service it represents an opportunity to provide essential support, likewise in areas where continued Long Covid provision is in doubt or where clinics have closed. In areas where provision is likely to continue, it presents an opportunity to bring specialists together under a new service structure that aims to improve health outcomes for more people.

This webinar will bring front-line clinicians together to share their own experiences of service provision, to discuss the future of integrated services for ‘infection associated chronic conditions’ and to hear how development leads and commissioners have overcome local challenges, involved patient representatives, will monitor health outcomes, and other factors that have played a role in the design (and launch) of integrated services.

Our speakers:

ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.

The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.

We will be joined by a range of clinical service representatives from England and Wales to demonstrate advances being made in the integration of specialist ME/CFS and Long Covid services with other conditions, and to present some of the challenges and opportunities of undertaking this work.

Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.

Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years.

Our webinar will be chaired by a special guest speaker to be announced soon.

Finally, additional breakout sessions will be delivered by representatives from several clinical societies and charities in ME/CFS and Long Covid.
___________________________
Click to expand...



'Our speakers:
ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.

The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.'




This is a total take over of 'ME services' in the NHS. Accomplished.
We are stuffed.

.
 
Trish said:
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.


M
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.
Click to expand...
Lou B Lou said:
'Our speakers:
ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.

The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.'




This is a total take over of 'ME services' in the NHS. Accomplished.
We are stuffed.

.
Click to expand...
Not if we challenge......

I am angry that 25 years of work and 2 years of successful intensive effort under a Task ^ Finish Group has been wiped off the face of the earth.
One of the speakers for 2nd July, tried from June, July 2024, to systematically dismantle our work.

Specification (version 4) and Pathway agreed by due process in May 2024.
MEA Charles was incredibly helpful and supportive. Thank you Charles.

Was reworked, without proper authority, to a 'version 14' to accommodate a different agenda and an existing provider.
Sorry to say, MEA reps approached August 24, failed us here......

I declared this unwarranted change and Beach of governance at ICB meeting in public. it's recorded.
I can send clip.

So, by Procurement launch 28th Jan 2025,.... it's been reworked backwards, again towards v4, but not quite....

Whatever the method or motive for the changes version 4 to version 17, is a matter of public record with all track changes recorded.

July 2nd Elaros should read, Re service development,

'We/I tried it on, but did not succeed ....'
Game over!
 
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Sasha said:
Our charities seem to go through phases, and in the bigger ones, there seems to be a constant bubbling up of BPS stuff while at the same time, the charities are promoting bioscience and trying to get it funded. That suggests to me a mix of different people holding different views. How much in the ascendant the BPS stuff is seems to vary over time, so I wouldn't give up on the MEA as a lost cause - particularly since what it does affects us all.

I think the question is how to challenge them effectively. Doing that from the outside seems less effective than from within.
Click to expand...
My comment was in relation to discussing this matter with the MEA. They weren’t responsive regarding Trish’s letter about PROMS, I doubt Russell Fleming will reply to the @ here, better to leave them to it and speak to other organisations about this app.
 
'Mi-Trial launches innovative new clinical trials app and portal to improve trial participation and outcomes'



Professor Paul O’Brien, Elaros CEO, said:

“ELAROS is delighted to be part of this exciting new venture where we can bring our extensive experience of developing clinical and research platforms and patient-facing apps into the clinical trial space. ELAROS’s recent relevant experience has been in developing and launching a Long COVID clinical and research platform, with a patient facing app which is now being used by 35 NHS trusts. These experiences and expertise will be brought into Mi-Trial Limited and will support the deep clinical trial experience that the other two partners bring to this new venture.”

The Mi-Trial system is available on iOS, Android and as a web-based app. To find out more about Mi-Trial, visit www.mi-trial.com.




'Mi-Trial, a new company which has developed an innovative clinical trial companion system and app, has recently spun out from the University of Manchester with support from Elaros 24/7 Limited, Medicines Evaluation Unit Limited and the University of Manchester Innovation Factory.

Founded by Professor Alex Horsley and Professor Jacky Smith, Mi-Trial’s clinical trial companion system and app have been designed to meet the needs of both trial participants and those managing trials while reinforcing the trial’s integrity.

In addition to the patient-facing app, which securely replaces the multiple pieces of paper traditionally used by trial participant and also provides reminders and updates, Mi-Trial utilises a portal to manage trial scheduling. The portal allows flexible scheduling of study protocols and avoids scheduling errors while reducing deviations. Perhaps most conveniently, the portal allows a robust communication channel between the parties involved in the trial.

Developed by experts in trials design and delivery as well as innovators in software design and usability, Mi-Trial will streamline the trial process, reducing visit errors and data wastage while saving time and costs for both trial centres and sponsors.'

https://meu.org.uk/mi-trial-launches-new-clinical-trials-app/

Mod note: This is a different app by the same company. This post has been copied to a new thread: Mi-Trial Clinical trial companion app and portal by ELEROS
 
Last edited by a moderator:
Trish said:
From earlier on this thread:


I think it's worth copying the information again here:

Webinar:

Quote:

Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services

Attend to hear about advances in clinical practice, research, and support for people with ME/CFS at home from a range of speakers

By ELAROS 24/7 Ltd

Date and time
Wednesday, July 2 · 1 - 3pm GMT+1
Location
Online

About this event
  • Event lasts 2 hours
This webinar is brought to you by ME Association and ELAROS 24/7 LTD and is aimed at clinicians, academics and service providers working in the fields of ME/CFS, Long Covid, and other long-term condition services.

This event will be recorded. Please email c19-yrs@elaros.com for a copy of the recording if you are unable to attend on the day.

Long Covid and ME/CFS share similar characteristics and have a similar impact on an individual’s ability to function normally. Infections are regarded as the triggers to these chronic medical conditions that certain individuals have difficultly recovering from.

In the absence of approved and effective treatments for either condition, management is the main tool we have to work towards a stabilising of symptom frequency and severity and an improvement in an individual’s life quality. It is essential that affected individuals are referred to a multi-disciplinary specialist team who can confirm a diagnosis, provide tailored care and support based on need, and advise on the tools necessary to manage health effectively.

The NICE Guideline (NG206) provides evidence-based clinical recommendations for the diagnosis and management of ME/CFS that can be applied to Long Covid where individuals whose difficulties stem from a Covid-19 infection meet the criteria for ME/CFS. We await final publication of NG188, the clinical guideline for Long Covid, last updated in January 2024.

Integration is being promoted because of a need to retain specialist clinicians and build provision for a larger patient community. We need to meet demand for early and accurate diagnosis and effective management for those with ‘infection associated chronic conditions.’ In areas where there is no ME/CFS service it represents an opportunity to provide essential support, likewise in areas where continued Long Covid provision is in doubt or where clinics have closed. In areas where provision is likely to continue, it presents an opportunity to bring specialists together under a new service structure that aims to improve health outcomes for more people.

This webinar will bring front-line clinicians together to share their own experiences of service provision, to discuss the future of integrated services for ‘infection associated chronic conditions’ and to hear how development leads and commissioners have overcome local challenges, involved patient representatives, will monitor health outcomes, and other factors that have played a role in the design (and launch) of integrated services.

Our speakers:

ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.

The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.

We will be joined by a range of clinical service representatives from England and Wales to demonstrate advances being made in the integration of specialist ME/CFS and Long Covid services with other conditions, and to present some of the challenges and opportunities of undertaking this work.

Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.

Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years.

Our webinar will be chaired by a special guest speaker to be announced soon.

Finally, additional breakout sessions will be delivered by representatives from several clinical societies and charities in ME/CFS and Long Covid.
___________________________
Click to expand...
We had proof, it was the 5 Feb 2025 meeting blurb which linked the PROMS with the app, can’t find the screenshot just yet
Edit- might have been on one of the other threads/moved.

post was by cinders66
https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/
My screenshot file is too big to post
 
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Found it on the MEA thread, oh but the quote within of the blurb hasnt transferred hereIMG_4072.jpeg

Cinders66 said:
I don’t know if this was seen?

ELAROS Hosts Webinar on Digitally Supporting ME/CFS and Long COVID Services - C19-YRS
https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/

On Wednesday, 5th February, ELAROS hosted a webinar on Digitally Supporting ME/CFS and Long COVID Services, bringing together key experts at a crucial time for the ME/CFS and Long COVID communities.
Click to expand...
 
Here's the detail from the February meeting.

Quote

ELAROS Hosts Webinar on Digitally Supporting ME/CFS and Long COVID Services

On Wednesday, 5th February, ELAROS hosted a webinar on Digitally Supporting ME/CFS and Long COVID Services, bringing together key experts at a crucial time for the ME/CFS and Long COVID communities.

The event featured a presentation from Sarah Tyson (University of Manchester/ME Association) and Russell Fleming (ME Association), who provided an update on the development of a new clinical assessment toolkit for ME/CFS, created in collaboration with people with ME/CFS and clinicians working in NHS ME/CFS specialist services.

Román Rocha Lawrence from ELAROS led the session, presenting our proposal to support NHS ME/CFS services in partnership with The ME Association. This collaboration aims to offer early exclusive access to The MEA’s clinical toolkit through ELAROS’ digital platform, which has already supported tens of thousands of patients across 65 health organisations worldwide, as well as national research studies and service evaluations for NHS England and NHS Scotland.

We were also joined by Anna Gregorowski, Chair of BACME (British Association of Clinicians in ME/CFS), a multidisciplinary organisation dedicated to advancing ME/CFS clinical care in the UK. ELAROS is working closely with BACME to signpost its resources, ensuring they are more widely accessible to clinicians and patients through our digital channels.

This webinar followed our highly successful Building a Long COVID Service Legacy series, which has helped clinical practitioners and commissioners explore innovative case studies and digital tools to enhance condition-specific and integrated long-term condition (LTC) services.

The session was particularly valuable for clinicians, researchers, and commissioners working in ME/CFS services, as well as those in Long COVID care looking to expand their service offering to include ME/CFS support.

For access to the recording of the webinar, along with the slides, please get in contact with us at:
C19-YRS@elaros.com

We look forward to continuing these important conversations and driving innovation in digital health solutions for ME/CFS and Long COVID services.
 
Trish said:
The above event is intended for professionals. I have just registered and had to provide my organisation and role, so I put Science for ME international forum and my role as committee member. I wonder whether that will pass muster as a professional. All I have to do now is remember to watch it.
Click to expand...
I wonder which charities are involved in the breakout sessions, apart from the MEA?I wonder whether ThereforME are able to attend?
 
Jonathan Edwards said:
I got briefly involved in the Suffolk plans but don't know where things go to. @Suffolkres will know.
Click to expand...
We had a year of 'Claire'........

(From June 2924.....).....
Meetings, emails, vagueness and singing from a different hymn sheet (C with other high level managers,
MEA ' involvement' opinions outside our Task and Finish Governance. via Russell F...a willing horse it would appear to us....

July 2024, But quite early on * we clocked the warning signs, and made a series of Statements, in Public at the Board meetings, via Healthwatch Suffolk and their timely intervention (thank you Andy CEO and Wendy Chair, HW)

August 2024 and by 5 formal complaints *over time via PALS(,....
September new 'Project Team' resulted in us being excluded......Complaint

October the resulting changes made without our agreement being reversed .... by Deputy CEO...

November service PIN EIO soft launch
Claire and Project Team use incorrect title, LC, ME and CFS for PIN requiring Addendum correction.... .another complaint! Nice try though C!

Project Team complaining about our scrutiny.....!! We are 'deselected' from anyservice user involvement....

January 2O25 28th Tender goes live... we were not informed.....except by my turning up at ICB Board meeting on 29th with a challenge about inclusion in draft pre launch spec again on rehabilitation.....

February 2O25 our 'dear John ' letter ICB ICP (unsigned)???!!!!

March.. procurement silence so we rally the troops who may be interested and leave the SUs to do their best.

ICB Meeting on 25th where I ask for an announcement in public that Tender Award has been made, subject to legal standstill till 30th May.

June Bingo! Despite all the odds against us, we secured our prize bidder and clinical lead.
I can only begin to guess what 2nd July will bring from C?

How NOT to do co production?
How those pesky service users won through despite our greater knowledge.
Damage and reputational recovery under umbrella of MEA? ... PROMs
Or 'MROMs' Manager Reported Outcomes Measures?





















ber
 
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Sean said:
In fairness, they have solved how to keep profiting off our suffering.

Quite successfully, apparently. :grumpy:
Click to expand...
Well, the appearance of profiting, anyway. This is psychobehavioral ideology, after all. Nothing is real, everything is made up.

Not a single person involved in this is actually profiting more than they would if sanity prevailed, even if they did work hard at it. Even the main quacks, their careers would all have been so much more fulfilling and less harmful and frustrating to them. And that doesn't even take into account the horrible legacy that will inevitably taint them Everyone loses here. Even governments and insurers, who keep their annual losses a tiny bit lower, but at the cost of keeping them indefinitely. Saving pennies to lose more dollars. As foolish as it gets.

In the category of self-defeating behavior, this is about right where buying a million dollar self-ass-kicking machine stands.
 
I wonder what it costs?
And how the cost compares to Visible*

*I know not everyone is a fan of Visible but at least it’s based on some science and uses FUNCAP. It’s not likely to cause damage, or harm. If the NHS said they were offering one or the other, and neither isn’t an option, Visible is better than Elaros or Nothing. They sell visible about £60 for a heart rate band and £15 per month, so £240 fora year, retail.
 
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