Telehealth in motor neurone disease: improving access to research and specialist care using innovative digital technologies

Motor neurone disease is an incurable neurological condition. SITraN works on the two main goals: developing treatments and improving the specialist care patients receive. Patients survive longer if they attend specialist centres but the severe disability presents major problems for patients as they are often too ill to travel to specialist centres. There is a need to develop systems that can enable all patients to access clinical care without the need to travel to hospital. In order to find treatments, better, more innovative clinical trials also are needed and there is currently a drive within the European network of MND research (EnCALS) to work together to develop a digital clinical trials platform to allow a large number of participants to be enrolled and collect more accurate data on their progress.

SITraN has developed a telehealth system (TiM: telehealth in motor neuron disease http://sitran.org/clinical-studies/telemedicine). Patients and carers can enter details about their clinical condition using an app. The data can be used to monitor wellbeing, detect and treat complications of the disease, potentially improving survival. We have tested TiM at a small scale but now need to test it in centres across Europe to help patients access both clinical care and research. We also want to add in and test additional devices which can measure biomarkers such as respiratory function, mobility, falls and sleep outcomes.

Project aims
This project will develop the clinical and research platform further and work with other specialist MND care and research centres within our European collaborator network to implement it.

The project objectives:
1) Conduct a review of current digital health systems and sensors to identify the best measures for the TiM.
2) Apply user-centred design techniques working with different stakeholders to further develop TiM using workshops at different MND centres in Europe.
3) Develop and validate digital outcome measures using patients and carers, comparing biomarkers collected by sensors with clinically meaningful outcomes reported by patients and existing clinical measures.
4) Explore the feasibility and acceptability of TiM using an iterative mixed-
methods approach with a gradual roll out at different sites.

Student development
The student will develop a diverse range of transferable skills including user-centred design, qualitative and quantitative techniques, clinical trials, digital healthcare technology development and the ability to work with patients, carers, industry and healthcare professionals. The student will receive support from leading experts in these fields so suitable candidates will not be expected to have experience in all of these areas. They should have some experience in one or more of these areas as well as good organisation, the ability to communicate effectively both face-to-face and in writing and have some experience interacting with patients, carers or healthcare
professionals.