Neurological Long-term Conditions: Online Integrated Care Platform Study

Study ID: 45228
Short Title: Neuro Online Study v.1.0
Organisation: University Hospital Southampton NHS Foundation Trust
Location: Southampton General Hospital
Condition: Multiple sclerosis
Main Specialty: Neurological disorders
Expected End Date: 30/04/2027
Postcode: SO16 6YD
Contact Name: R&D department
Contact Email: R&Doffice@uhs.nhs.uk
Active: Yes

Inclusion criteria, exclusion criteria and study summary

Patient participants in this study will: i. already be enrolled in the Neurological Conditions section of the My Medical record platform. ii. have a diagnosis of one of the following neurological conditions: multiple sclerosis, Parkinson’s disease, headache, epilepsy, motor neurone disease, Huntington’s disease or atypical or early onset dementia. iii. be 18 years of age or older. iv. have capacity to consent to the study. Carer participants in this study will: i. be enrolled as a delegate in the Neurological Conditions section of the My Medical record platform. ii. be a carer for a participant defined above. iii. be 18 years of age or older. iv. have capacity to consent to the study. Healthcare professionals that participate in the study will: i. have a variety of roles including consultants, specialist nurses and therapists. ii. be using the Neurological Conditions section of the My Medical Record platform with one or more of their patients. iii. have a clinically appropriate reason for use of the Neurological Conditions section of the My Medical Record platform.

Exclusion Criteria i. Individuals without access to My Medical Record. ii. Individuals not meeting inclusion criteria.

Better support for people through digital platforms enhancing self-management may have a significant role to play in improving care, but only if they actually work, and if people make use of them. My Medical Record is a secure, online platform used for patient care and self-management adapted for a number of neurological conditions. The present study aims to evaluate the factors that influence the uptake, use, and effectiveness of an online self-management platform for patients, carers and healthcare professionals. The Neuro Online study will enroll people with long-term neurological conditions and assess the effectiveness and acceptability of the platfom in these individuals, their carers and healthcare professionals. We will use questionnaires, together with MyMR system data on the frequency and duration of use of the platform itself. We will assess the use of the platform over time to see whether platform use is affected by changes in a person's neurological condition. Participants will have the opportunity to participate in a number of additional studies (sub-studies) which focus on particular issues such as Quality of Life, what individual characteristics are associated wtih 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 if 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 simple and appealing to use. The findings should help improve design and usefulness of these online tools.

Study MapList of studies

Accessibility tools

Return to header