TiM and MyPathway?
TiM stands for Telehealth in Motor Neuron Disease. The TiM platform is a system through which people with MND and their carers can enter data about their condition on a weekly basis. Their answers are automatically analysed and are available to their MND care team, who can then take action.
We are using a company called ADI who already provides this service to other patients in Sheffield Teaching Hospitals, using a program called MyPathway. This is an NHS approved, secure system which makes sure that the information is safe and kept confidential.
Professor Chris McDermott, Consultant Neurologist at the Sheffield MND Care and Research Centre, conceived the idea and developed the system:
“We hope that the TiM system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise.“
Emily Goodall, a member of the Sheffield Motor Neuron Disorders Research Advisory Group, who represent patients and their families suffering from 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.“
You will be invited to sign up for MyPathway if you are a patient under the care of Sheffield MND Care and Research Centre, or you are the main carer for someone who has signed up.
Once you have given your details you will be sent questionnaires to fill in every week. You can choose when and where to complete them. They should take around 5-10 minutes per week and you can ask someone to help fill them in for you if you wish. Carers will be asked to fill in questionnaires every two weeks.
We will also use the TiM to send you information about MND that we think might be relevant to you. This might include information about the COVID-19 outbreak or about other things related to MND.
The information is sent immediately to the Sheffield MND care team who will look at your answers. If they are happy with the answers, they will send you a message to tell you this. If they need to take action, they may contact you, your carer, or another member of the care team.
TiM is not an emergency or urgent service. If you are unwell or have an urgent problem, you should seek medical attention as you always would.
It is important to know that your answers will be looked at on a routine basis and that, during the COVID-19 pandemic, there may not be sufficient staff available to immediately deal with every problem.
No, it is entirely voluntary and does not affect the other services we offer.
If you or your carer do not wish to sign up to TiM then you can just ignore the invitation.
If you sign up and decide you do not wish to complete a questionnaire, it will disappear from the system after one week.
If you decide you do not want to hear from the TiM anymore, please get in contact with your clinical care team.
We are using a company called ADI who already provides this service to other patients in Sheffield Teaching Hospitals using a program called MyPathway.
This an NHS approved, secure system which makes sure that the information is safe and kept confidential. Information is only shared within your care team. Information given by a patient is not shared with their carer unless they give consent and vice versa.
The only time information might be shared without your consent is in the very unlikely event that the team thinks serious harm might occur if they do not share this information. We will always try to talk to you first in this situation.
There is more information about how your information is kept private here.
We are hoping to roll this system out to other centres in Europe shortly.
If your centre takes part, you will receive an invitation.
This project is run 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.
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 (MNDA), and Mylan Pharmaceuticals.
We conducted a research study of the TiM and published several papers which you are welcome to read:
Using Telehealth in Motor Neuron Disease to Increase Access to Specialist Multidisciplinary Care: A UK-Based Pilot and Feasibility Study
Process Evaluation and Exploration of Telehealth in Motor Neuron Disease in a UK Specialist Centre