Principal Investigator: Professor Chris Kipps

Team members: Dr Sarah Fearn, Dr John Spreadbury, Dr Rachel Chappell, Dr Corine Driessens

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

Starts: 01 October 2021

Ends: 30 September 2023

Background

The COVID-19 pandemic has changed the way neurological care is delivered to involve greater use of digital technology such as videocalls, smartphone apps or online platforms. 

University Hospital Southampton (UHS) has been developing its own electronic personal health record and self-management platform called My Medical Record.  This online care platform offers patients more control over their healthcare by allowing them to:

• access their clinical letters and appointments in one place

• message their clinical teams for advice

• read relevant information on their condition

• monitor and share outcomes.

Data from the platform, however, indicates differences in uptake and use amongst different groups of patients and healthcare professionals. 

Existing research also tell us that there are still important issues to understand around the uptake and use of digital technology in neurological care and long-term conditions more generally.

Aims and Methodology

The main aim of the research is to understand how to optimise the use of digital health technology in neurological conditions (multiple sclerosis, Parkinson’s disease or Atypical Parkinsonian Syndrome (APS), headache, epilepsy, motor neurone disease or other neuromuscular disorder, Huntington’s disease, atypical or early onset dementia). This will include how to optimise the use of My Medical Record for patients at UHS.

The research will involve three interrelated pieces of work or ‘work packages’:

• Work Package 1 will use interviews and focus groups with neurological patients, carers, and healthcare professionals to investigate attitudes toward digital health technology and My Medical Record.

• Work Package 2 will use surveys with neurological patients to investigate relationships between personal and clinical characteristics and how people use digital health and My Medical Record.

• Work Package 3 will use the findings from Work Package 1 and 2 to produce some strategies to support people with neurological conditions to use digital health and My Medical Record. The strategies will be produced together with patient, carer, and healthcare professional groups in co-production workshops.

  
  

Outcomes

The NHS has highlighted the greater use of digital health technology as a way to improve the delivery of care over the next 10 years. The findings from the research will help us to better understand how to promote, optimise and support the use of digital health for people with neurological conditions, including the use of My Medical Record.

Taking Part

If you would like more information about the study or are interested in taking part, please contact Dr Sarah Fearn via email at S.Fearn@soton.ac.uk or Dr John Spreadbury on 07876818404 or jhs101@soton.ac.uk.