An App for the self-management of long term conditions in Salford
Research type
Research Study
Full title
An App for the self-management of long term conditions in Salford, using Multiple Sclerosis as an exemplar.
IRAS ID
277797
Contact name
David Rog
Contact email
Sponsor organisation
Salford Royal NHS Foundation Trust
Duration of Study in the UK
0 years, 9 months, 13 days
Research summary
Summary of Research
This project evaluates the use of an app to support self-management of long-term conditions, using Multiple Sclerosis (MS) as an exemplar.The app is a mature, CE-marked, product, LINCUS, a generic health self-management tool produced by One Medical Group (OMG), and is a top-rated NHS App on the NHS endorsed ORCHA App review platform.
Prior to the evaluation described in this application – in a separate service development initiative between Salford Royal Hospital, the MS Trust, Salford University, will customize the LINCUS App using a co-creative process involving people living with MS, (and their carers), clinical teams, technology developers and a multidisciplinary academic team.
The App allows for patient self-monitoring and education, and remote monitoring by MS health professionals. Monitoring includes built in measures that are PROMs or PREMs including quality of life, pain and fatigue. The App has the ability to launch information provided by third parties (in this case the MS Trust); these can be matched by LINCUS algorithms to give patients the information they need depending upon, type or stage of disease and disabilities as well as to demographics such as education, gender, reading age, language etc. The app has features that support the collection and sharing of information between people living with MS and the health professionals they interact with.
Once customized, the app will be made available to MS patients in Salford via an MS clinic at Salford Royal Hospital and will be evaluated as described in this application. The evaluation will investigate acceptability, use of the app and self-management and will provide insight into the App’s ability to: a) meet the individual self-management needs of MS patients in Salford and; b) improve service delivery in Salford by enabling staff to deliver care more efficiently and appropriately.
Summary of Results
Aims:
The main objective of the study is to investigate the acceptability and use of the Lincus app and how it facilitates patient self-management, in people with multiple sclerosis.
Background:
The project is at the heart of the NHS long term plan (2019) specifically in its focus upon delivering world class care for major health problems, and assisting people to age well. The long-term plan also points to the imperative to adopt digital technologies to transform the health of the UK population. The Department of Health has also made it clear that the analysis of individual long-term conditions suggests that the numbers are growing, and the number of people with multiple long-term conditions appears to be rising. This is accelerated in an ageing population where we know that long-term conditions are more prevalent in this group. Increasing individuals’ capacity to manage their health is key to reducing the healthcare burden from long term conditions.
Generally, it is understood that digital technologies are helpful in a variety of ways regarding the self-management of a variety of long-term conditions. They are also at the heart of Public Health England’s current strategy.
There are currently approximately 410 people with MS living within Salford CCG, the MS service is growing at a rate of 10% per annum, which is outstripping physical capacity, human capital, and operational resources and the complexity of cases is similarly increasing. MS is an ideal long-term condition to choose as an exemplar, because:● MS has a broad range of symptoms and features and many are common to other long-term conditions; fatigue, co morbid depression and anxiety and cognitive deficits.
● The age of onset is early, 20-40 years, which matches that of digitally native technology users better than many other common long-term conditions that have a later onset.
● The most avid users of health Apps in general are young females which matches the demographic of MS incidence. ● Within the MS population there is a cohort of highly motivated patients and we have already identified many of these who are willing to participate in our project.
Previous research acknowledges that effective provision of information is a determinant in helping people self-manage their own illness which then has the potential to improve self-care, health behaviour, and quality of life. These studies have shown that self-management interventions have the potential to improve the efficiency of health service utilisation without compromising health outcomes; however more evidence is needed regarding which components of self-management are effective. One element of our study is to examine the principle of digital self-management, alongside the acceptability and use of the app. Once the principle of digital self-management in practice has been established, it can be scaled to other clinical patient populations.
Methods:This study aimed to use a variety of methods to evaluate the acceptability and use of an app to MS patients and compare this between different demographic groups. It aimed to examine the impact of the app on: patient self-efficacy (an indicator of self- management), patients’ information and support needs and service delivery. We aimed for patients to use the App for 32 weeks, however slow patient recruitment meant that this was not possible for all patients.
Data was collected via the app and via group interviews with patients and staff. Data from the app was analysed using inbuilt analytics and group interview data was analysed using thematic analysis. Only pseudonymized data was received, stored and analysed by the University of Salford. A Research Assistant based at Salford Royal Hospital MS clinic liaised between patients, MS clinic staff and University of Salford staff.
All patients with MS who live in Salford and attend the MS Clinic at Salford Royal Hospital were eligible for participation in the study. Patients were recruited via the MS clinic at Salford Royal Hospital (see below).
Key findings:
The project succeeded in recruiting 52 patients to use the App, achieving its minimum target of 50 users. Ongoing engagement and retention of these patients with the App proved challenging and 25 patients went onto to use the App and of these only 1 used it for 6 months. Again, this was largely, but not exclusively, a function of the Covid constrained environment within which project staff and patients were working.
The low number of users produced insufficient quantitative data from onboard metrics or self-efficacy questionnaires to draw meaningful findings about the App’s usage and impact on patient self-efficacy. A series of focus groups which involved 13 patients and 2 HCPs were successful in providing qualitative data that has furnished the project with the following learning points.
1. The first learning point is inculcating a culture that convinces the staff responsible for delivering the project, and the wider MS clinical Team, of the merits of the endeavour
2. The second point is submitting an appropriate and timely NHS ethics application. It is well known that researchers should build in appropriate time to navigate NHS ethics, however navigating ethics and governance at both local and national levels immediately post covid proved challenging and time consuming which impacted adversely on the project’s timeline and the time remaining to recruit patients.
3. It is important to develop and sustain a patient advisory group (PAG). This is seen as fundamental to the success of similar projects. Whilst the patient representation on this project management board worked well a broader PAG should have been established and supported.
4. The project should be appropriately resourced. In this instance lack of such resources was largely a function of the Covid constraints but this impacted adversely on the project. The first was in patient recruitment where the staff at Salford Royal often appeared overwhelmed and the second was the lack of a single dedicated project manager for the length of the project.
5. Appropriate digital avenues for recruiting patients should be fully exploited. For example, use of a QR code that patients could scan to enable them to access the App and appropriate supporting documentation, has worked in similar projects
6. This method could well exclude those lacking in digital confidence so should be used in conjunction with specific, targeted methods to ensure the inclusion of the socio-economically disadvantaged or digitally illiterate in any such project. One example might be using local meeting spaces, libraries etc, to host an introductory session to the purpose of the App.
7. This point emphasises the importance of trusted relationships in patient recruitment. This might involve for example, using the MS nurses to build upon their relationships with patients or, as an HCP suggested, exploiting the doctor – patient relationship and foreground the consultants in recruitment literature or videos.
8. This next point underlines the importance of patient onboarding to the App. The marketing industry contend that a ‘good’ onboarding can result in up to a 50% increase in user retention for the App in question. Testimony from participants suggested that the onboarding process did not achieve this and potentially explained the low or infrequent usage of the App. Greater resources and attention should be applied to this stage in any future iteration of the project and where possible should be via face-to-face interactive group sessions. These sessions should not only instruct patient on how to use the device but should emphasise the benefits to the patient from using the App.
9. Notifications are common to most Apps and patients appeared surprised that this feature was absent from this App. There is evidence that such ‘push factors’ can promote greater patient engagement with the device in question.
10. This is about reducing ‘participant burden’. Evidence suggests this can increases patient retention. Features of the digital tool used here failed to do this. Firstly, the device was not an App. It was a web link that could be accessed from a mobile device, but it was not designed specifically for this purpose. As such many of the participants used their laptops instead with some suggesting they might have used it more if it had been an App on their phone. Another recurring theme from the patient interviews was that the App’s questions were repetitive. Patients perceived that they were being asked the same question but in a slightly different way.
11. The device should provide real time data on patient usage to enable staff to contact patients and provide support if required
12. This point emphasises a requirement for a consistent set of staff working on the project. Here, staff changed throughout the project both at SRFT and at the technology partner which hampered communication and product delivery.
13. Similarly, the technology partner should be mandated to produce a beta version of the App that can be used by study staff and patients alike to identify and rectify any issues. A development environment version of the App was sufficiently different to be able to draw any conclusions on live format and usability. The technology partner were unable to provide iterations of the App, based upon feedback through the study, as had been envisaged.
14. Individualisation of an App is, according to the marketing industry, ‘craved by App users.’ This was underlined here by several participants who commented that the App’s features were less appropriate to PwMS who had been living with MS for a while, but whose illness was relatively stable. Alongside this another mentioned that given dexterity was an issue for PwMS the App should have the facility to receive oral instruction through an interface.
15. The device should enable the rating, by PwMS, of the bespoke meta-tagged information (from the MS Trust), pushed to the PwMS based upon their initial digital profile of symptoms and other MS-related characteristics.
16. This concerns optimum usage. If all the prior learning points were to be applied, then it is more likely that patient engagement and retention with the digital device would be increased. However, evidence collected here suggests that patients would still use the device as frequently as it suited them and their circumstances. When asked about how often they would use such a device – when fully customised and integrated into their patient record at the hospital- the responses varied from ‘daily’ to ‘once every month or two.’ So the lesson here is that as long as this is satisfactory for the patient and their clinical care, and they do remain engaged with the device, then their frequency of use may be less significant.REC name
London - Dulwich Research Ethics Committee
REC reference
21/LO/0300
Date of REC Opinion
3 Jun 2021
REC opinion
Further Information Favourable Opinion