Development and implementation of a digital health intervention in routine care for long COVID patients: a comprehensive synopsis, 2025, Goodfellow+

SNT Gatchaman

SNT Gatchaman

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Development and implementation of a digital health intervention in routine care for long COVID patients: a comprehensive synopsis
Henry Goodfellow; Ann Blandford; Katherine Bradbury; Manuel Gomes; Fiona Hamilton; William Henley; Fiona Stevenson; Delmiro Fernandez-Reyes; John Hurst; Melissa Heightman; Paul Pfeffer; William Ricketts; Richa Singh; Hannah Hylton; Stuart Linke; Julia Bindman; Chris Robson; Sarah Walker; Hadiza Ismaila

BACKGROUND
By July 2020, large numbers of post-COVID patients were experiencing symptoms for weeks or months, but traditional National Health Service models of rehabilitation service delivery could not meet demand.

OBJECTIVES
Design and deploy a digital health intervention to provide digitally delivered, remotely supported rehabilitation to long COVID patients on complicated and evolving pathways.

METHODS
The multidisciplinary team combined established research methods based on engineering and computer science (considering safety, stability and user requirements) with those based on biomedical and health service research (considering effectiveness and population impact). Qualitative data comprised recordings of meetings between study team members and clinicians and semistructured interviews with clinician and patient users. Quantitative data comprised referral, registration and usage rates; demographic and clinical characteristics of patients; and patient-reported outcome measures.

RESULTS
We created a modifiable digital health intervention, ‘Living With COVID RecoveryTM developed by Living With Ltd, London, UK, that continues to be used by National Health Service trusts. The digital health intervention included integration into a clinical pathway, a clinician-facing dashboard, two-way messaging and a patient-facing app with information and evidence-based treatments. We aimed to register 1000 users. By study completion on 20 December 2022, there were 9781 patients invited, of whom 7679 (78.5%) had registered, at 33 National Health Service clinics.

LIMITATIONS
Data came from patients at long COVID clinics, however data were unlikely to be representative of people with long COVID. We could not observe clinics under lockdown and had limited access to patient digital health intervention users or to people not engaging with the digital health intervention. Patient user data were incomplete, with inconsistent patient-reported outcome measure and other questionnaire data completion and no data on initial severity of disease, vaccination status, comorbidities or other individual circumstances.

CONCLUSIONS
• Long COVID can be extremely debilitating, comparable to stage IV lung cancer in relation to fatigue and health-related quality of life. Care and rehabilitation should address the management of fatigue and reflect the impact of social disadvantage on symptom severity.

• With sufficient resources, a digital health intervention can be developed quickly and effectively using agile methodology and bringing together a genuinely multidisciplinary team, including, importantly, an industry partner.

• Digital health intervention product design and deployment are both important in getting National Health Service trusts, healthcare professionals and patients to engage with a digital health intervention. Projects should work closely with all user groups.

• Lockdown and the unmet need of a new patient group encouraged those who might otherwise have been reluctant to try a digital health intervention. Many patients and clinics accepted this digital remote support, which helped patients feel cared for while reducing strain on health services. This may encourage acceptance of other digital health intervention, although medical record integration remains a deterrent to clinics.

FUTURE WORK
This research focused on the development, deployment and evaluation of a digitally enabled rehabilitation programme for long COVID. Clinical effectiveness will be assessed within the Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (UCL, London, UK) study.

FUNDING
This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR132243.

Web | PDF | Health and Social Care Delivery Research | Open Access
 
That abstract is quite telling.

Here's my reading between the lines 'comprehensive synopsis' of 'Development and implementation of a digital health intervention in routine care for long COVID patients: a comprehensive synopsis':

Long Covid can be bad.​
We think rehabilitation works​
Management of fatigue is important (my comment: even though no one really knows how to do that in Long covid yet)​
We can quickly make a digital health app if we have sufficient resources​
It is necessary to engage with health care organisations and staff and patients for success -- we probably didn't do that enough​
People with Long Covid have been desperate enough to try almost anything, making them an easy market for an app​
Clinics liked being able to offer an app as it was undemanding of healthcare resources and made it seem like they were doing something​
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The data collected is very patchy and of poor quality and as yet we have no idea we don't know if the app helps clinically.​
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A health intervention can't be a bargain if it is essentially useless.

(@SNT Gatchaman - when I saw 'Goodfellow' I braced myself for some fresh hell from the New Zealand organisation that trains GPs. So, the actual content came as something of a personal relief, even though this is not good news)
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Yep I have the same Pavlovian response (trauma-informed haha).

This is a UCL / Barts / Southampton / Exeter team, including Melissa Heightman. The following passage was included —

In memoriam
This report is dedicated to late Professor Elizabeth Murray, the driving force behind this project. It was her vision that brought together a truly multidisciplinary group to work on it, crossing barriers between academics and healthcare professionals, patients and industry, to harness the areas of expertise necessary for success. Her loss in April 2023, following a year and half of illness, has had an impact on every aspect of the work. She is greatly missed, but her legacy of using research to make life better for patients and healthcare professionals lives on.
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Prof. Murray was quoted in an article in 2021, noted in this post —

Many people suffering from long Covid feel worse than patients with advanced lung cancer, according to the first major study to quantify the impact of the condition on people’s lives.

The average score on the standard EQ-5D-VAS “quality of life” test among 800 long Covid patients at 15 NHS trusts was worse than for most people with cancer, including some of the most advanced stages of lung cancer, according to University College London (UCL).

The study found that patients were “severely impaired” in performing everyday tasks such as working, shopping and looking after their children.

Professor Elizabeth Murray, who is overseeing their treatment as part of the Living with Covid Recovery programme, says: “It was a real wake-up moment.”
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I was surprised to see this section included, and it seems like they were surprised as well:
Many of the long COVID patients in the study were seriously ill

They had fatigue scores worse or similar to people with cancer-related low blood counts or severe kidney disease.

Many patients also reported HRQoL scores, which were lower than people with advanced cancers, like stage IV lung cancer (see Walker et al.8).

From 6 months after registering with the LWCR DHI, there was a modest reduction in the mean HRQoL impairment scores, but it was estimated that 45% of patients still had moderately severe or worse impairment.

This is similar to the levels seen in patients with chronic inflammatory conditions and above the estimates for breast cancer and HIV. Levels of impairment for long COVID were higher in younger patients (aged < 50 years), female patients and patients from the most deprived areas (see Wang et al.9).
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They heavily imply that the improvement might have been caused by the use of the app, even though they say that they can’t know for sure.

It doesn’t seem like they’ve considered the possibility that people might have reported similar improvements without them.
We cannot evaluate impact of the digital health intervention on symptom reduction, although there are some positive signs

Our research has helped to uncover the details and trajectories of symptoms for long COVID in this population. However, the emphasis on the speed and reach of the DHI precluded the establishment of a randomised controlled trial (RCT). Our collaborators in the STIMULATE-ICP RCT1 will evaluate the impact of the DHI on symptom reduction.

However, compared with most studies reported in the HCI literature on health technologies, the LWCR project has had demonstrable impact on patients’ supported self-management. We found that over 50% of the patients, who were invited to participate in the LWCR project by July 2022, appear to have perceived some benefit: of the 7239 patients who had been invited to use LWCR by that point, 5684 registered (78.4% of those invited), and over 4600 patients read library articles and completed PROMs questionnaires (see Blandford et al.4).
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I've done a quick skim of this paper.
A few things of interest that struck me:

The project started soon after the pandemic started and was initially intended to focus on lung and breathing problems from people who had been in hospital with Covid, including those who had been in intensive care.

They soon found that their main patient group was people with disabling fatigue plus other symptoms.

The qualitiy of life and fuction of these patients was as bad as people with serious illnesses.

The company Living With also has an ME/CFS app but this wasn't mentioned anywhere and ME/CFS isn't mentioned anwhere in the article, nor is PEM. I did see one mention of monitoring people who are crashing so therapists could intervene.

It looks like PROMs are not well received by patients (surprise surprise - not), with so few filling them in that they couldn't get useful data on them for research.

The data wasn't able to be downloaded to patient records or linked to patient records because of different IT systems.
 
It does seem to be quite a confused project with a mix of or even moving and uncertain goals and outcomes. I suppose some of that can be put down to the time of the pandemic but possibly not all.

The lack of recognition that Long Covid may lead to ME/CFS and the entire clinical blind spot there is obviously a significant one. But hardly unique to this project.

I’m going to spend a bit more time on this, I went in bit sceptical but putting aside the above limitation it’s good it’s been written up as a project retrospective. I think it could be useful and informative nevertheless.
 
My short overview

The project aimed to find out if they could develop a digital and remote tool if it could in any way if not replace then support face-to-face care. Arguably it did succeed in doing those things and this is a paper on implementation.

That there are question marks over the effectiveness of that tool and the clinical picture is something different. Let’s see what they say when the report on STIMULATE-ICP comes out, but it looks like clinical failure or at significant question marks.

They also highlight the huge unmet need and the significant impact on quality of life on people. As well as the challenges within the NHS which would stop this or any tool that is developed for things with a better clinical picture from succeeding. Both these seem good.
 
My longer notes for the brave! (Sorry, longer than I realised, splitting into sections)

Background and clinical picture
The project was at a time when remote services were needed. Face to face wasn’t viable. The original plan made sense in the context set out.

The problem was part of that context was wrong and things changed. That the project moved from a sort of ‘rehab people after being in hospital’ to ‘helping people live with a debilitating condition we don’t know what to do with’ seems like a massive change in project scope nobody was ready for.

They adapted pretty well considering.

The elephant in the room is of course the Long Covid and ME/CFS crossover and that experiences learnt from ME/CFS seem to have been ignored.

And that they have no idea of clinical effectiveness, no comparison to other interventions or no intervention, question marks over PROMs. All these things others have covered I agree with.

I think it’s impossible therefore to claim that as an intervention this is a success. Another paper is going to look at this.
 
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A project retrospective
But looking at it as an implementation study or project retrospective is useful. And I can see why that is seen as a success.

There does appear to be some overselling in places. Possibly to justify the funding they got or to get more in an environment no doubt more constrained and with more oversight than during the pandemic. Maybe even to fit what the policy direction is around digital services. Or just because so many papers do.

But they did get a mixture of NHS Trusts, Universities/Research departments and a private company to work together. They listened to and changed the tools based upon what the clinicians asked for and patient feedback. And did roll out a tool to many people.

There are lessors on how to implement and roll out digital health tools here, working with different groups and getting acceptance from those groups. And a lot of data gathered.

There is also information here that backs other research on where bottlenecks are to do within the NHS. And if matched with proper clinical knowledge I see no reason why the approach couldn’t be useful.

Most agree that fixing the fragmentation of and age of the NHS IT system would be a win for everyone from patients through to staff and make doing more things easier in the future. Different systems which don’t talk to each other make things difficult for patients now. We’ve all seem the knock ons in terms of ease of use and wasted time.

I’m also not against digital solutions, and think there is a place for them within the NHS. Allowing patients and clinicians to interact remotely, Nd not in realtime, these could all be very useful. Especially for those of who cannot attend out patients departments or clinics.

It does also seem to have been a fairly cost effective way of getting digital tools (under 200k to the Living With). Of course knowing the value of those tools is still a question, some of that goes back to the clinical flaws here not the technological or implementation ones though.
 
Appropriateness
For conditions where rehabilitation is appropriate this whole approach may be a good way of helping them. I know a lot of people who forms of rehabilitation or physio has helped (post operation, musculoskeletal, even my mum with PD gets value from physio).

Let me ask people this. How would they feel about having digital tools they could use to work with a proper specialist team who was delivering and monitoring treatments we had found could actually help us?

Maybe people would look at this differently and we would still need to fix the things highlighted in this report to deliver that well. I found the paper interesting looking at through that lens, one of development and implementation.
 
The money to the tech company to develop the app may not sound much, but this company has produced apps for 'living with' lots of other conditions paid for by the NHS. I assume the basic app structure is the same for all of them with its interactive interfaces etc, so all the need to do for each condition is slot in the information materials, questionnaires and symptom lists for each condition. And presumably they go on cashing in patient by patient paid for by clinics.

They say it was successful in that lots of people signed up to use it, but their measure of 'success' seemed very low, just that lots of people signed up for it and did some interaction and/or looked at some materials. The very low use of PROMs seems indicative that patients were not able or willing to use it wholeheartedly as intended.

They say they couldn't get ethics and data safety agreements sorted out in time to analyse the patient data from users, but they could easily have done a feedback survey of clinicians using it.
 
hotblack said:
Let me ask people this. How would they feel about having digital tools they could use to work with a proper specialist team who was delivering and monitoring treatments we had found could actually help us?
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This is the key, though. Do you know of any treatments for any conditions that would fit this bill?

And how would you ensure that people were not just pushed in the direction of an app instead of getting appropriate medical attention?
 
Utsikt said:
This is the key, though. Do you know of any treatments for any conditions that would fit this bill?
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Yes I think it could, I outlined some in my post. But we won’t know for sure unless we run trials and find out.
Utsikt said:
company has produced apps for 'living with' lots of other conditions paid for by the NHS.
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Economies of scale, sounds good! It works for other areas of NHS procurement.

Let me ask this. Do people think here is any place for digital services or apps in healthcare?

I think there probably is, but we need to understand and learn how best to deliver them and that is as important as what we deliver. We need to study both.
 
hotblack said:
Let me ask this. Do people think here is any place for digital services or apps in healthcare?

I think there probably is, but we need to understand and learn how best to deliver them and that is as important as what we deliver. We need to study both.
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Yes, I think so, though not necessarily for ME/CFS at this stage when there is no treatment and lots of awful PROMs. I think from what we've seen that there's too much risk of misuse to push people to follow 'rehab' programs via and app.
 
Trish said:
Yes, I think so, though not necessarily for ME/CFS at this stage when there is no treatment and lots of awful PROMs. I think from what we've seen that there's too much risk of misuse to push people to follow 'rehab' programs via and app.
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Absolutely agree. The push for apps in the context of ME/CFS seems completely inappropriate.

And I share a lot of the other concerns about how things could be used beyond that. Perhaps I’m being naive in trying to set some of those aside. But I am also hopeful that we could have good digital services and apps. Just as we have both good and bad non digital services.

I suppose I’m interested in that aspect of it, the how of delivering digital services/products. Learning how to do that well seems an important area for the future of healthcare. Anyway I’ve written far too much for today!
 
hotblack said:
Let me ask this. Do people think here is any place for digital services or apps in healthcare?

I think there probably is, but we need to understand and learn how best to deliver them and that is as important as what we deliver. We need to study both.
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To make routine communication easier - absolutely.

To track well established parameters like home monitoring of blood pressure - absolutely.

For other aspects of healthcare - I’m very sceptical. I fear it’s going to be used to make it less resource intensive to provide ineffective treatments from the rehab and psychosomatic sphere of influence.
 
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