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Neurological long term conditions: Online integrated care platform study (NeuroOnline)

Principal Investigator: Dr Chris Kipps

Team members:

Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton

Dr Sarah Fearn, Senior Research Fellow, University of Southampton

Dr John Spreadbury, Senior Research Fellow, University of Southampton

Dr Alex Young, Senior Research Assistant, University of Southampton

Dr Rachel Chappell, Project Manager

Start:  1 June 2020  Ends: 31 May 2027

Project Partners: University of Southampton, University Hospital Southampton NHS Foundation Trust, The Health Foundation

Lay summary: Digital health platforms can improve care and support self-management, but only if they actually work and if people make use of them. The Neuro Online study aims to better understand how the online platform My Medical Record can be used to support and improve care for people with long-term neurological conditions.

Aims: We want to better understand the factors that influence the uptake, use, and effectiveness of an online care and self-management platform for patients with long-term neurological conditions, their carers and the healthcare professionals who care for them.

Design and Methods: The Neuro Online study will use surveys and My Medical Record system data to better understand how and why people use the Neuro section of My Medical Record.

We will recruit 2000 patients, carers and healthcare professionals to participate for up to 7 years. During this time we will track how they use the online platform and their thoughts on it.

We will also ask patients and carers about their well-being and their patient activation measure so that we can compare their experiences with the platform to this information.

Participants will have the opportunity to participate in a number of additional sub-studies, which focus on particular issues such as quality of life, what individual characteristics are associated with use (or not) of the platform, and whether certain functions of the platform such as care planning are useful. A small number of patients will be asked to participate in face-to-face interviews to assess their use of the platform. NHS staff will be surveyed to see if platform use changes how they deliver care.

As online platforms are increasingly being developed for the NHS, we hope the study will help understand how to make them relevant, useful and appealing to use. The findings should help to optimise the design and usefulness of these online tools, with the aim of supporting and improving the delivery of care.

Related publication:

A Comprehensive Literature Search of Digital Health Technology Use in Neurological Conditions: Review of Digital Tools to Promote Self-management and Support

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