Sheffield Institute for
Translational Neuroscience

TiM2

What is TiM and 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 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.

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”.

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Why have I been asked to join TiM / MyPathway?

We have invited you to sign up for MyPathway either because 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.

What will happen now?

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.

What happens to the information?

The information is sent immediately to the Sheffield MND care team who will look at your answers. If there no problems and you are stable, 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.

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.

Why have you contacted me now?

We have been developing and testing the TiM 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 crisis. 

The basic TiM system will be available to people living with MND and clinic staff straight away 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. 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.

What has happened to the normal care I get for MND?

At present we are still offering outpatient appointments, but these are largely being done by telephone or video call to protect patients and staff from COVID-19. There is also still an MND helpline available in Sheffield: 0114 222 2266. You can also still call MND Connect: 0808 802 6262. Your community teams and GP can also advise but their services will also have had to change. We hope to resume usual service as soon as we can but we think that TiM can help with this as it can help us monitor people more often, between clinic visits and even, if they wish, instead of clinic visits.

We will keep this website up to date as circumstances change.

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 does 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. 

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.

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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

I am having problems use the system, how do I get help?

For technical support you can contact ADI on:

0330 321 1223 or

email: support@mypathway.care

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 care line 0114 222 2266.

I am cared for at another MND centre, can I use TiM?

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?

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 the TiM, you can contact the consultant in charge of your MND care or the Sheffield MND telephone advice line.

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How can I find out more about the TiM?

We have conducted a research study of the TiM system and published several papers which you are more than welcome to read:

https://bmjopen.bmj.com/content/9/10/e028526

https://bmjopen.bmj.com/content/bmjopen/9/10/e028525.full.pdf

Hobson, Esther V, Wendy O Baird, Rebecca Partridge, Cindy L Cooper, Susan Mawson, Ann Quinn, Pamela J Shaw, Walsh Theresa, Daniel Wolstenholme, and Christopher J McDermott. “The TiM System: Developing a Novel Telehealth Service to Improve Access to Specialist Care in Motor Neurone Disease Using User-Centered Design.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 0, no. 0 (February 22, 2018): 1–11. doi:10.1080/21678421.2018.1440408.

Hobson, Esther V, Wendy O Baird, Cindy L Cooper, Sue Mawson, Pamela J Shaw, and Christopher J McDermott. “Using Technology to Improve Access to Specialist Care in Amyotrophic Lateral Sclerosis: a Systematic Review..” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 17, no. 5 (July 2016): 313–24.

Hobson, Esther V, Saima Fazal, Pamela J Shaw, and Christopher J McDermott. “‘Anything That Makes Life’s Journey Better.’ Exploring the Use of Digital Technology by People Living with Motor Neurone Disease.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 34 (February 20, 2017): 1–10.

 

https://www.sth.nhs.uk
https://www.mndassociation.org
/mnd-and-coronavirus/

Twitter
@neuroshef
@SheffieldHosp
@drestherhobson
@profcjmcdermott

Sheffield MND helpline: 
0114 222 2266

MND Connect:
0808 802 6262

TiM technical support:
0330 321 1223
Email:
support@mypathway.care