Telehealth in Motor Neurone Disease
What is TiM and MyPathway?
TiM stands for Telehealth in Motor Neuron Disease. The TiM platform is a system hosted on the application, MyPathway, through which people living with MND, and their carers, can enter information about their condition on a weekly basis. Their answers are then available to their MND care team, who can make plans to support the person living with MND.
The National MND Service (Ireland) are partnering with colleagues in the Sheffield MND Care and Research Centre in the UK, and 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, adapted for use in Ireland, 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”.
Professor Orla Hardiman, Consultant Neurologist at Beaumont Hospital and who brought TiM on MyPathway to Ireland “This is one of the best innovations in the delivery of care for those with MND in Ireland. Given the difficulties imposed by the COVID-19 pandemic, it is vital that we can continue to deliver quality care throughout the country, regardless of location. TiM will be a great enabler.”
Why have I been asked to join TiM on MyPathway?
We have invited you to sign up for TiM on MyPathway either because you are a patient under the care of the National MND Service in Beaumont Hospital, 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 on a weekly basis. These will be different each week, and will ask about different aspects of your health and wellbeing related to MND. 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. If you have identified a carer to join TiM with you, they will be asked to fill in similar, but different questionnaires every two weeks about your, and their own wellbeing.
We can also use TiM to send you information about MND that we think might be relevant to you, or that you request. This might include information about the COVID-19 outbreak or about other issues related to MND itself.
What happens to the information?
The information you provide on the app (i.e.: answers to the questionnaires) is sent to a secure database managed by the National MND Service at Beaumont Hospital. Your answers will then be reviewed and if the clinicians feel that they need to take action, they may contact you, your carer, or another member of the clinical care team. The information you provide will also help us schedule your appointments in the clinic for when you most need them, to avoid unnecessary travel and to maximise the efficiency of your clinic visit.
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, while your answers will be looked at on a routine basis, we may not be available to immediately deal with every issue. If you have urgent issues that need to be addressed, you should seek advice or help from your usual sources (e.g.: GP, MND nurse specialist).
How will the TiM system develop?
Our colleagues in Sheffield Teaching Hospitals NHS Trust and the University of Sheffield have been developing and testing the TiM platform with patients, carers, and staff for about seven years. We had been working towards bringing this system to Ireland for some time and during the COVID-19 crisis we were awarded a Health Research Board (HRB) grant to help us do this. The basic TiM on MyPathway system will be available to people living with MND and clinic staff straight away, but we plan to make ongoing developments and so you should expect this service to grow and improve in the future. We will be asking people for feedback to develop the system and may approach you about participating in interviews or questionnaires about your experience in using TiM on MyPathway.
What has happened to the normal care I get for MND?
The usual care that you receive at the MND clinic will continue. At present we are seeing people during outpatient appointments in the clinic, but due to COVID-19 many appointments are being done by telephone or video call. We believe that TiM will help us manage the needs of patients during the COVID-19 pandemic, as it can help us monitor people more often and guide when visits are needed.
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 on My Pathway platform anymore, please contact with your clinical care team. If you have not been invited to sign up and would like to find out more please contact your MND nurse to discuss this.
Is my information safe and confidential?
We are using a company called ADI who have developed the MyPathway application and program. It is already being used with other patients, including MND patients, in Sheffield Teaching Hospitals.
MyPathway is a secure system which makes sure that the information is safe and kept confidential. It has been approved for use by the NHS in the UK has also been approved by the Beaumont Hospital Data Protection Officer. Information is only shared within your clinical care team (i.e.: staff at the MND clinic in Beaumont Hospital). 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 using the system, how do I get help?
You could ask a carer, friend, or family member to help you complete the questionnaires. If you are having difficulties using the TiM on MyPathway system please call 083-0238166.
If you feel that you need help with your care you can contact the MND Nurse in your hospital, or your IMNDA nurse.
For technical support you can contact ADI on email: firstname.lastname@example.org
Who is in charge of the TiM?
This project began in Sheffield and is being led there 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. In Ireland, Professor Orla Hardiman, Consultant Neurologist at Beaumont Hospital, is coordinating this initiative.
If you have any concerns about TiM, please contact the MND clinical team in charge of your care, the MND Nurse in your hospital, or your IMNDA nurse.
How can I find out more about the TiM?
Research on the TiM system has been published, which you are more than welcome to read:
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.
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