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.

What did we find out?

With regards to personal characteristics affecting use:

We found that older age, lower education, lower income, lower literacy and lower patient activation* were all associated with lower digital health technology uptake and use and more negative views.

*Patient activation is a person's level of knowledge, skills and confidence to manage their condition(s)

We found that gender and health status were not associated with uptake, use* or views.

* Exception of health status and direct contact with healthcare team when participant has a specific issue

Whilst we found that symptoms associated with having a neurological condition impacted the use of digital healthcare, we found that people with a neurological condition had access to digital healthcare (e.g. the tech / internet connection etc) comparable to the general population.

We also held three co-production workshops to identify strategies that could support or promote the use of digital health technology amongst people with neurological condition.

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These were the suggested strategies:

What difference can this new knowledge make?

Understanding the attitudes towards, and use of, digital health technology for people living with neurological conditions, their carers and their HCPs allows us to identify areas where more support might help promote and improve use.

Identifying personal and health characteristics associated with more negative views and / or lower rates of use can help us to identify those more likely to need, or benefit from, additional support.

Co-designing strategies to help support and promote the use of digital health technology for people living with neurological conditions, their carers and their HCPs, allows us to create support mechanisms that have been co-developed with the users themselves.

Why is this important?

The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care.

The use of digital health technology offers an opportunity

The NHS Long Term Plan highlights the use of digital mechanisms as key enablers to improve NHS care delivery over the next 10 years. The use of digital health technology has the potential to help reduce variation or inequality in care, make care more integrated or joined up, identify people at higher risk of poorer outcomes, and promote self-management.  It can also support clinicians to be more efficient, freeing up time for the sickest patients.

Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS.

Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS.

Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS.

Our findings can help to improve support to people with neurological conditions to use digital health technology. It can do this by:

Understanding the benefits and challenges of use

Identifying those most likely to need or benefit from additional support

Co-developing implementable strategies to support or promote use

What Next?

We will be using the findings from this study to:

-Publish academic publications

-Present at medical conferences

-Present to groups of people with neurological conditions

-Present to national support organisations

-Present to ICB (digital transformation work programme); UHS (IT); Neurological Alliance

-Inform the Optimising Outpatients project, which aims to create recommendations for the use of remote care in neurology outpatient services.

We are continuing to analyse the data and disseminate findings to a wide audience.