Remote health monitoring
TiM on MyPathway
What is TiM on MyPathway?
TiM stands for Telehealth in Motor Neuron Disease. The TiM platform is a system through which people living with MND and their carers can enter data 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 the person living with MND.
We are partnering with a company called ADI who already provide a similar 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.
This website provides some information for people with MND and their carers regarding the TiM service. Also, we have included some contact details should you wish to speak to us or ask any questions. If you would like to see information concerning the research projects we are conducting alongside this service, please look at our page on the SITraN website http://sitran.org/clinical-studies/tim2/
If you have already created a TiM on MyPathway account, please follow this link to login: https://mypathway.care/login
Professor Chris McDermott, Consultant Neurologist at the Sheffield MND Care and Research Centre, conceived the idea: “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”.
Dr Hobson, Consultant Neurologist, developed the system: “We worked closely with patients, carers and MND specialists to develop something that we hope will be useful to people, especially when they can’t come to clinic”.
Emily Goodall, a member of the Sheffield Motor Neurone 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”.
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”.
Who can join TiM on MyPathway?
You will be invited to sign up for TiM on MyPathway if you are a patient under the care of Sheffield MND Care and Research Centre, or you are the main informal carer for someone who has signed up.
You will need an email address to join the TiM service. Also, the main informal carer must use a different email address if they wish to join too. If you do not have an email account already, this is not a problem and we have set up a short guide (PDF) to help give advice on how to create on.
What will happen next?
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 TiM on MyPathway to send you information about MND that we think might be relevant to you. This might include information about COVID-19 or about other things related to MND.
What happens to the information?
The information is sent immediately to the Sheffield MND care team who will regularly look at your answers. If they need to take action, they may contact you, your carer, or another member of the care team. You may not receive a message if everything is okay with your scores.
How quickly will I get a response?
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.
Do I have to sign up?
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 on MyPathway system anymore, please get in contact with your clinical care team.
If you decide you do not want to hear from the TiM anymore, please get in contact with your clinical care team.
Is my information safe and confidential?
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. 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.
If I have problems using the system, how do I get help?
For technical support you can contact ADI:
Telephone: +44 330 321 1223
Email: support@mypathway.care
TiM & MyPathway Help and Support website
You could ask a carer, friend, or family member to help you complete the questionnaires. If you are still having difficulties, you can contact the MND clinical care nurses on +44 114 226 5388 or via email at sth.mndnurses@nhs.net.
I am cared for at another MND centre, can I use TiM on MyPathway?
We are hoping to roll this system out to other centres across Europe shortly. If your centre takes part, you will get an invitation.
Who is in charge of the TiM on MyPathway?
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.
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.
If you have any concerns about TiM on MyPathway, you can contact the consultant in charge of your MND care or the Sheffield MND telephone helpline.
Why have you contacted me now?
We have been developing and testing the TiM platform with patients, carers, and staff for around seven years. We had planned to start to use it in our clinical service later this year, but we have sped up this process because we realise how difficult it may be to get support during the COVID-19 pandemic.
The TiM on MyPathway system will be available to people living with MND and clinic staff straightaway, but we plan to make further developments so in the future you should expect this service to grow and improve. Please bear with us during this time and let us know what you think of the service to help us improve. In the future, we plan to use this system to send you information about your outpatient appointments, letters from your doctor, and other useful information about MND. We will be asking people for feedback to develop the system.
How can I find out more about the TiM?
We conducted a research study of the TiM platform and published several papers which you are welcome to read:
Process evaluation and exploration of telehealth in Motor Neuron Disease in a UK specialist centre