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

@Russell Fleming is a member here. Russell, can you explain how the MEA has ended up in the middle of this mess, associating with people with a history of not understanding ME/CFS and causing harm, promoting pacing up? Has the MEA learned nothing from the history of AfME's involvement in the DWP funded PACE Trial?

I can't see AfME getting involved in trying to limit the harm of this initiative. For one thing, they are busy, with DecodeME and with what comes next, with their new website and associated services. For another thing, tackling the MEA would probably be seen by AfME decision makers as 'too negative'. For sure, actions that can be seen as squabbling among patient charities are unedifying and won't win influential friends. It wasn't so long ago that AfME was championing Gladwell's material. I doubt that AfME will want to tackle government agencies in any strenuous way either - it's not how they work.

I wouldn't be surprised if the ME/CFS Delivery Plan comes out in the middle of all this - with the government taking advantage of publicity around DecodeME results, and this new app a central part of the 'look, we are doing something!' message.

Barring Charles Shepherd or someone else who is influential in the MEA seeing sense and taking some action, or a major change in the MEA Trustees, I can't see much offering even momentary resistance to the steam roller that this initiative is. I think MEA members should be looking hard at mechanisms to improve the quality of that charity's governance. I forget, are the MEA Trustees elected? The current trustees have not only endorsed this initiative, they have funded part of it.

Possibly, having influential journalists quoting those Bristol clinic outcome results and asking the question of why someone responsible for those poor outcomes now seems to be in the driving seat of this initiative might have some effect. But the reason for the opposition is quite difficult to explain. Many people hearing about it might think 'do they not want to get well?', 'isn't having goals a good thing', 'isn't it good for the clinicians to have more information about the person'?

I find it really hard to understand why Gladwell has been received so well by the UK's two leading ME/CFS charities. Anyone with experience of ME/CFS and some sense should be able to see that his knowledge of ME/CFS is shallow and his preferred approaches are ineffective, time wasting and patronising.

 

Summing up my understanding of the situation so far with this app.

Who is producing the app.
The Open-OH app is being developed by a private company called Elaros in conjunction with clinicians from Leeds who run their LC services, and funding from the DWP and DHSS.

Content of the app:

The app so far has, for LC, PVFS, FM and ME/CFS:

3 questionnaires for participants to fill in as and when they want to with data recorded. The questionnaires are one for LC, one for FM and the Chalder one for fatigue, presumably intended to be relevant to all 4 conditions.

Facility for patients to record personal data on symptoms, activities, diet etc as and when they want to that is recorded.

The patient data to be accessible to the patient's clinicians and possibly in anonymised form to researchers, including government bodies? There is a lengthy data privacy policy for participants to read, and tick that they agree to before being able to use the appl.

There is a significant amount of advisory material on each condition, including activity management/pacing, descriptions of the conditions including PEM, and advice for clinicians, employers.

The material on PVFS includes the advice to pace to avoid PEM, BUT it advises pacing-up, baselines, diary keeping, increasing activity after only a week of stability etc.

The information on ME/CFS comes straight from BACME. I haven't read it all yet.

Beta testing feedback and access to the app

The app is still in development, with more to be added including more questionnaires/PROMs.

The app developers have invited feedback and questions.

The ME Association has publicised this beta testing on Facebook, saying they are not recommending it, but informing people that they can participate.

The app is available in app stores for anyone to use. It includes the option of providing feedback to the developers.

ME Association, the MEA/Tyson clinical toolkit and PROMs involvement.

This is where it becomes unclear to me. So far, as far as I know, none of the MEA funded Tyson project materials are on the app, nor did I see any explicit mention of MEA or this project involvement with the app, but they have both presented at meetings, and there's another one in July.

There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?

 

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.
___________________________

 

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.