TIME
The Telehealth in MND system: development and evaluation (TIME)
UK Chief Investigator
Professor Chris McDermott
Research summary
Telehealth in MND (TiM) is a remote monitoring system for people with MND and their carers, who complete regular questionnaires through the system, which are reviewed by healthcare professionals. We also have funding to develop a research-specific TiM system. Therefore, the current service is called TiM-Care and the new system is called TiM-Research. This project aims to develop and evaluate the two systems.
The project is split into four parts:
Firstly, implementing new digital services into the NHS is difficult. We wish to understand what helps and hinders the implementation process, with the aim to create a ‘toolkit’ that can help us implement TiM easier in the future. This toolkit could also be helpful for other digital services. To create the toolkit, we will interview 10-15 people who have been involved in implementing TiM as a service.
Secondly, to develop TiM-C and TiM-R, we wish to gain the views of the people who are or will be using these systems. We will hold individual and group interviews with MND patients, their carers, healthcare professionals, MND researchers, and industry representatives to understand what needs are currently unmet and how TiM can be developed to meet these needs.
Thirdly, to evaluate TiM-C, we will conduct a process evaluation. This will include questionnaires and interviews for MND patients, their carers, and healthcare professionals to understand what they like and dislike about TiM-C. We will investigate how people engage with the system, by looking at how many questionnaires are completed through TiM. Lastly, we will observe how TiM is used during clinical appointments and multidisciplinary team meetings by attending these meetings and making notes.
Fourth, we will examine the costs involved in deploying TiM-C by estimating the time it takes to review the questionnaire answers by healthcare professionals and also how these costs affect the clinical service.
Current status
Open to recruitment
Recruitment target
460 participants in the UK
Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)
Recruitment groups
Patients with MND
Carers
Healthcare professionals
MND researchers
Industry staff
Locations
Sheffield (Principal Investigator: Chris McDermott)
Other sites to be confirmed
Contact details
Dr Liam Knox Email: L.Knox@sheffield.ac.uk
Key dates
Recruitment opening date: 24 July 2023
Planned recruitment end date: 30 November 2026
Inclusion / exclusion criteria
Inclusion criteria for patients with MND:
Aged 18 or older
Diagnosis of clinically definite, lab supported, clinically probable, or possible MND by the El-Escorial criteria and additionally the PMA variant where appropriate investigation has excluded mimics of MND
Capacity to give informed consent
Has been invited to create a TiM-C account at least one month ago
Can understand written/verbal English
Inclusion criteria for carers:
Aged 18 or older
Capacity to give informed consent
Has been invited to create a TiM-C account at least one month ago
Can understand written/verbal English
Inclusion criteria for healthcare professionals:
Healthcare professionals who provide support to MND patients, including medics, specialist nurses, dietitians, speech and language therapists, physiotherapists, occupational therapists, healthcare assistants, etc.
Part of a multidisciplinary team that has used the TiM-C system for at least 1 month
Can understand written/verbal English
Inclusion criteria for MND researchers:
Aged 18 or older
Any researcher who has previously or is currently conducting research with MND patients, their carers, or healthcare professionals
Can understand written/verbal English
Inclusion criteria for Industry staff:
Aged 18 or older
Currently or recently (within last year) employed by an industry organisation that has conducted clinical research involving MND patients. This includes clinical trials, questionnaire-based studies, qualitative research, or telehealth research.
Can understand written/verbal English
Funder
NIHR Academy
Sponsor
University of Sheffield
Study design
Observational
Outcome measures
Primary outcome measure
TBC
Secondary outcome measures
TBC