What is the challenge your project is going to address and how does it connect to your chosen theme?

MND is a rapidly progressive, life-limiting disease with limb weakness, difficult swallowing and breathing, reduced cognition and requires high levels of complex care over short timescales. Current care is provided simultaneously by acute and community teams (neurologists, specialist nurses and nutrition, speech and physical therapists). Care is also provided by primary, social and palliative care.

Care co-ordination across multiple teams is challenging for patients, carers and clinical staff

Patient centric, digital care, empowers information sharing with care givers and options for self-management. Healthcare monitoring of changes in function and care need, can be transformed using digital technology

Delivering care digitally frees staff to concentrate on complex face to face care delivery?

Often quoted but it is not truly clear if digital pathways truly deliver care differently or create additional steps with little value.  Using MyMR we want to maximise this technological opportunity

What does your project aim to achieve?

Maximising local engagement, to learn how digital platforms can support conditions where timeliness of response, decline in function and changing needs are key factors. Coproduction of a strategic framework to inform future virtual outpatient care including

• safe monitoring and functional change support in real-time
• defining the value-add of digital technology in complex care
• maximising information sharing to improve quality of care and self-management

We will do this by asking patients, carers and staff

• What important care elements would patients like to be delivered digitally?
• Which aspects of outpatient care could staff deliver better digitally?
• Can digital delivery improve the timeliness of care delivery in a rapidly declining group?
• Does transfer from traditional to digital care free up workforce capacity?
• How do care teams need to work differently to maximise digital opportunity?
• Does putting pwMND at the centre of their digital care improve their experience?

How will the project be delivered?

MyMR is developed at University Hospital Southampton, but available nationally. The team has led the development of neurological self-management on MyMR. The lead works with the CLAHRC and Clinical Network with strong links to acute care, IT, community rehab, researchers, and commissioners. The clinical teams are enthusiastic to maximise the use of digital technology (MyMR) to improve patient care delivery.

We will work with a group of pwMND (10) and carers to seek their views. Participants will be identified via the acute team with consideration to diagnosis and appropriateness including research ethics and IG process.

We will seek the views of the immediate care teams and wider local and national stakeholders (GP’s, social care, MND association, regional neurological staff)

We will explore the opportunities and challenges for a range of current virtual elements including assessment questionnaires, pre/post outpatient questionnaires, structured messaging between appointments and alerting

What and how is your project going to share learning throughout?

This is a co-produced learning project to focus on delivering a useful and effective virtual pathway including the

• aspects of a complex care pathway (GP to end of life) which can be delivered digitally
• impact of digital delivery on patient care and engagement in self-management
• impact of digital on workforce moral, engagement and future delivery of care differently
• processes needed to ensure that technologically achievable virtual care pathway steps are fully utilised

Learning from this project will be useful in local and national changes to care delivery models including

• the development of MyMR in other Trust pathways where patient decline, short timescales and carer involvement are key factors
• changes to the business models of Wessex neurological services as all neuro pathways move to a greater adoption of digital technology to deliver outpatient care differently.
• wider understanding of the usefulness of digital technology to patients and carers in virtual self-management