Neuro LTC: Online digital platform towards better supporting patients with chronic neurological conditions. - COMPLETE

Theme 2

Ageing and Dementia


We developed an online platform to support and improve healthcare self-management, care planning and outcomes measurement for five neurological conditions.

The problem

NHS care in neurological clinical pathways is often fragmented, with barriers to access, communication and little integrated care management.

An online platform enables:

• shared information visible to patients,

acute and community teams 24/7

• co-production of health goals, and outcomes

from both clinical and patient perspectives

• research evidence base improving care planning through outcome measures, health questionnaires and research studies


The project demonstrated that an online platform was viable and could deliver innovative care to improve outcomes.

The platform utilised existing functionality:

• patient access to clinical letters and test results

• dissemination of condition-specific information

• secure messaging

We developed functionality enabling

patients to:

• upload and share their information

• complete online diaries and questionnaires to monitor changes in condition

• co-produce personalised care plans

• participate in research


• Sites created for multiple sclerosis, epilepsy, Parkinson’s disease, Huntington’s Disease and Motor Neurone Disease

• 140+ patients registered with clinical team support

• Creation of co-produced care plans

• Health outcome measurements embedded

• Positive patient feedback

Lessons learned

Innovative digital development raises new challenges. It can be expensive and is often built onto existing infrastructure and systems.

Improvement methods should include agile processes, phased developments, pushing in short bursts, quick wins and use of opportunistic levers to gain maximum effect.

• Alignment of clinical and IT processes is essential; acknowledge different cultures

• Project established as agile innovator but also linked to Trust goals

• Co-production vital for cross-organisational working and including patient views

• Visionary stakeholders and enabling stakeholders are key but may be different people

Next steps

• Focus on improving uptake to drive value of platform

• Create shared vision for further development with IT and clinical groups

• Spread learning to Trust goals (re-imagining outpatients and improving outcomes)

• Possible expansion to 22 UK neurosciences centres

• Research study developed to evidence improvements and outcomes

Information video

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