My Stroke Companion - personalised digital support for stroke survivors and their families

My Stroke Companion: A digital companion to empower stroke survivors in understanding and managing life after stroke

• Supports stroke survivors in their recovery and self-management
• Reduces health inequalities by providing accessible, tailored information
• Aims to decrease hospital readmissions and outpatient appointments
• Enhances clinical efficiency by streamlining patient education

Impact at a glance:

• A ‘good’ or ‘excellent’ understanding of stroke increased from 31% to 88% for stroke survivors, and 35% to 96% for caregivers after they accessed ‘My Stroke Companion’ 
• 81% of stroke survivors and 93% of caregivers felt that the platform was ‘fairly’ or ‘extremely’ easy to use and navigate 
• 91% of stroke survivors and 92% of caregivers felt that the content was easy to understand 
• Overall, 91% of stroke survivors and 85% of caregivers were ‘somewhat’ or ‘very’ satisfied with ‘My Stroke Companion’ 

This programme is available to license to support stroke survivors and their carers across the NHS. Contact hello@cognitant.com to find out more.

The background: 

Globally, stroke is one of the leading causes of death. In 2019, 6.6 million people died from stroke worldwide. [1] In the UK, stroke is the fourth biggest killer, with more than 100,000 strokes recorded each year. That is around one stroke every 5 minutes. [2] There are approximately 1.3 million stroke survivors in the UK and many more family members living with the sudden, unplanned and life-changing consequences of stroke. [2] 

The economic impact of this is vast, with strain placed on healthcare services as well as other sectors in society. Costs associated with stroke have been estimated in the UK at around £26 billion per year. [3] 

Despite significant global progress in prevention, treatment and rehabilitation, stroke survivors and their families often face challenges navigating life after a stroke, in part due to a paucity of accessible information. Cognitant’s ‘My Stroke Companion’ is a platform that supports stroke survivors and their families, clinicians and healthcare systems to overcome the challenges presented by stroke and contribute to better outcomes. 

The challenge: 

The hyper-acute stroke unit (HASU) at University College London Hospitals (UCLH) sought to improve the support given to stroke survivors and their families. This included empowering stroke survivors with information pertinent to their diagnosis and care plan, helping them reduce the risk of secondary stroke, and connecting them to local support networks and services. 

Currently, most stroke survivors have access to general information about strokes that are non-specific, non-local, not tailored to their specific concerns, ethnicity or social background and not from a trusted source. UCLH were hoping to provide personalised health information tailored to the diverse needs of stroke survivors, whilst filling gaps in available information. 

UCLH also hoped to deliver efficiency savings through the provision of information that could be consumed virtually in the comfort of a stroke survivor’s home rather than in the clinic setting. 

The solution: 

With support from UCLH as the lead clinical and pilot site, Cognitant developed a platform called ‘My Stroke Companion’. Available on Healthinote, the platform contains information tailored to each stroke survivor discharged from stroke units. Following the successful pilot, ‘My Stroke Companion’ has been rolled out to four additional NHS sites. 

Features of ‘My Stroke Companion’ include: 

• Separate versions for stroke survivors and caregivers 
• A minimalist, easy-to-use layout to cater for people with a range of reading abilities and technology skills 
• Explainer videos and visual content to help users fully understand and memorise information 
• Easy read downloads for people with significant speech and language difficulties, or for those who are digitally excluded 
• Personalised information, including: 
  • type of stroke and post-stroke symptoms 
  • rehabilitation and guidance on leading a healthy lifestyle 
  • medications prescribed 
  • health conditions related to stroke 
  • local support groups and hospital contact information 
• A standardised, holistic information package, covering topics including: 
  • Lifestyle changes to help prevent secondary strokes 
  • Driving, work and finances 
  • Sex and relationships 
• Signposts to further high-quality and trusted information provided by approved external stakeholders – The Stroke Association, Headway, Different Strokes  and SameYou 
• A ‘My Health Data’ function, allowing users to set health goals, and log and track their health data 
• Translation of the entire stroke survivor platform into Arabic and Polish, with plans to further expand the translation offering over time, in line with local needs 

 

Personalisation of ‘My Stroke Companion’ 

‘My Stroke Companion’ enables clinicians to create a bespoke version of the platform, based on a stroke survivor’s individual diagnosis and care plan. It is personalised by clinicians through the completion of a simple checklist on Healthinote, selecting information relevant to their patient. 

 

 

When submitted, the checklist automatically populates a cover letter (which can be reviewed/checked and input into the stroke survivor’s electronic health record). The clinician can then add this to a printed discharge summary, send it via email or SMS, or present a QR code to their patient. 

Stroke survivors can then access ‘My Stroke Companion’ with their unique information prescription content via Healthinote, on smartphones, tablets or desktop.  

The design approach:  

‘My Stroke Companion’ has been iteratively developed using a multidisciplinary co-creation approach. This has involved conducting regular focus groups and 1:1s with stroke survivors, their caregivers and family members, and clinicians.  

In addition, Cognitant convened an expert advisory group to help guide the project. This group comprised clinicians, academics, patient advocacy leaders and representatives of charitable organisations.  

 

The results 

Between May and November 2023, there were 504 information prescriptions issued by clinicians to stroke survivors, resulting in 400 unique users accessing the platform. 

In the same time period, people spent an average of 6 minutes navigating around ‘My Stroke Companion’ and engaging with key content relevant to their stroke and care plan. 

An optional, anonymous survey was used to evaluate the acceptability and usability of ‘My Stroke Companion’. Between September and December 2023, 42 stroke survivors and 26 caregivers completed the survey. 

• A ‘good’ or ‘excellent’ understanding of stroke increased from 31% to 88% for stroke survivors, and 35% to 96% for caregivers after they accessed ‘My Stroke Companion’ 
• 81% of stroke survivors and 93% of caregivers felt that the platform was ‘fairly’ or ‘extremely’ easy to use and navigate 
• 91% of stroke survivors and 92% of caregivers felt that the content was easy to understand 
• Overall, 91% of stroke survivors and 85% of caregivers were ‘somewhat’ or ‘very’ satisfied with ‘My Stroke Companion’ 

Additionally, feedback indicated increased knowledge in all domains – including medicines, rehabilitation, accessing support, and preventing further stroke. The most significant increase in knowledge related to knowing where to find local support services, with an increase from 16% to 75% for stroke survivors (N=12), and 36% to 90% for caregivers (N=11). 

Testimonials 

“[The information] is all in one place and it is targeted at me and my condition… it is trustworthy and avoids a ‘Google diagnosis’… and helping caregivers makes a huge difference.” – Stroke survivor 

“This new educational platform will allow more people to understand their stroke and increase their likelihood of recovery. The information, shared both with stroke survivors and their carers, will always be accurate, appropriate and well-presented, unlike information searches on the internet, which can often be inaccurate and unsafe” – Dr Rob Simister, Clinical Lead of the UCLH Comprehensive Stroke Service 

Interested to learn more about ‘My Stroke Companion’, or use it in your stroke unit? 

‘My Stroke Companion’ is now available for use across stroke units in the UK. Please contact the Cognitant team to find out more: hello@cognitant.com 

References 

[1] GBD 2019 Stroke Collaborators. Global, regional, and national burden of stroke and its risk factors, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet Neurol 2021;20(10):795-820 

[2] Stroke Association. Stroke Statistics. Available at: www.stroke.org.uk/what-is-stroke/stroke-statistics. Accessed: January 2024 

[3] Stroke Association. Current, future and avoidable costs of stroke in the UK. Available at: https://www.stroke.org.uk/sites/default/files/costs_of_stroke_in_the_uk_report_- executive_summary_part_2.pdf. Assessed January 2024