Research suggests that multidisciplinary team care for people with Motor Neuron Disease (MND) is effective at increasing length and quality of life. However, travelling to specialist centres to receive this care can be time consuming and problematic. Additionally, appointments are usually once every three months, with little information available for healthcare professionals in-between these visits.

To overcome these issues, we partnered with Sheffield Teaching Hospitals and a company called ADI, to develop a system to increase the communication between people with MND, their informal carers, and healthcare professionals. The system is called Telehealth in MND (or ‘TiM’ for short) and operates on the ADI system ‘MyPathway’.

TiM on MyPathway enables people living with MND and their carers to enter information about their condition on a weekly or fortnightly basis. Their answers are then available to their MND care team, who can then take any action necessary to support those affected by MND. 

Although we have previously done some research on a similar system (see https://sitran.org/clinical-studies/telemedicine/), this was only conducted at one site. Additionally, we identified that further developments were required to the clinician-facing side. Therefore, we successfully applied for a grant from MND Scotland to implement TiM on MyPathway in Sheffield and Edinburgh, and evaluate the system using mixed-methodology.  

This website provides some information regarding the research we are doing to investigate the effectiveness of TiM on MyPathway and help develop the system further. For people with MND and carers wishing to know more about the TiM NHS service, including who to contact if you need help, please visit the Sheffield MND Care and Research Centre here: https://sheffieldmndcarecentre.group.shef.ac.uk/tim/

Emily Goodall, a member of the Sheffield Motor Neurone Disorders Research Advisory Group, who represent patients and their families affected by MND, said: “This app has the potential to make a huge difference to patients with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated”.

Craig Stockton, Chief Executive of the charity MND Scotland, the lead funder of the project, said “It is fantastic to see the ADI MyPathway system ready for launch and we are delighted to have funded such a life-changing service. This telehealth app will transform the way in which specialised care is provided to people with MND, particularly during the coronavirus pandemic where face-to-face care is much more difficult”.

The initial plan and the impact of Covid-19

We originally planned to co-develop the TiM on MyPathway system over a 12-month period, inviting people with MND, carers, and healthcare professionals to focus groups, where they could provide their views on the development iteratively. We would then begin to implement this as a research intervention at Sheffield and Edinburgh, recruiting participants, and evaluating the system over 24-months.

Unfortunately, as Covid-19 began to emerge, we realised that we would no longer be able to host the focus groups we had planned. However, we also understood that providing a system to enable people with MND and carers to still receive care without having to attend in-person clinics, may just be what was needed. Therefore, we took the decision to reduce the development time from 12-months to 6 weeks, and implement TiM on MyPathway as a clinical service, going live in Sheffield MND Care and Research Centre in May 2020. Since then, we have created two research projects to enable us to see what people think about the system and allow us to collect feedback to help us develop TiM further. We have called these two projects ‘Phase 1’ and ‘Phase 2’, although in reality we are conducting both at the same time – they just measure and evaluate different parts of TiM.

TiM: Phase 1

The first phase of the TiM research programme aims to investigate the barriers and facilitators of rapidly implementing a telehealth platform to support people with MND. We hope that by collecting the experiences of those involved in the implementation process, we can find ways to overcome the barriers and help the facilitators, enabling future sites wishing to use TiM on MyPathway an easier way of adopting the service.

Within this phase, we are collecting service data, such as technical reports and meeting minutes, to see what goes right and wrong at the start of the implementation process. We are also recruiting the healthcare professionals who are using the TiM on MyPathway clinical portal to participate in remote observations and semi-structured interviews. By collecting and analysing this data, we can identify what we need to improve to help the professionals who are reviewing the information entered by people with MND and carers, and make further developments as necessary.

TiM: Phase 2

The second phase of the TiM research programme aims to investigate the positives and negatives of the TiM on MyPathway service. By collecting a wide range of data, we hope that we can iteratively co-develop the system, making it as beneficial as it can be for the various people use it on a daily basis.

We are currently recruiting people with MND, carers, and healthcare professionals to provide their thoughts on the TiM on MyPathway system. Therefore, if you would like to find out more information or participate, please get in touch with the TiM Trial Manager (Dr Liam Knox: L.knox@sheffield.ac.uk). Participating can be as little as completing a short survey, or you could potentially give us your feedback during a remote interview.

By analysing all the information we receive about the TiM system, we can investigate how effective it is at supporting the current multidisciplinary care available. We can also make further developments, ensuring that we meet the needs of all TiM on MyPathway users.

Who is in charge of the TiM?

This project is led by Consultant Neurologists Dr Esther Hobson and Professor Chris McDermott at the Sheffield MND Care and Research Centre at Sheffield Teaching Hospitals NHS Trust and the University of Sheffield. Dr Liam Knox is the research Trial Manager. It is funded by MND Scotland and has also received support from patients and carers, Devices for Dignity, the University of Sheffield Telehealth and Care Technologies group, the National Institute for Health Research (NIHR), the Motor Neurone Disease Association, and Mylan Pharmaceuticals.