My stroke companion – personalised digital support for stroke survivors
Globally, stroke is one of the most common causes of death. In the UK, around 100,000 strokes are recorded each year. Currently, most patients have access to general information about strokes that are non-specific, non-local, not tailored to their specific concerns, their ethnicity or social background. The hyper-acute stroke unit (HASU) at University College London Hospitals (UCLH) sought to improve the support given to stroke survivors. Cognitant supported UCLH to develop a digital support centre (DSP), called ‘My Stroke Companion’. ‘My Stroke Companion’ enables clinicians to create a bespoke and personalised information prescription based on a patient’s individual needs.
Globally, stroke is one of the most common causes of death. In 2019, 6.6 million people die from cerebrovascular disease worldwide, and more than 100,000 strokes were recorded each year in the UK. That is around one stroke every five minutes, making it the fourth biggest killer in the UK. The economic impact of this is vast, burdening health care services as well as other sectors in society. Costs of stroke have been recently estimated in the UK at around £26 billion per year.
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. Despite significant global progress in prevention, treatment and rehabilitation of stroke, patients 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’ serves as a digital package (DSP) that supports the population, clinicians and healthcare systems to reduce the challenges presented and generate better care outcomes.
The hyper-acute stroke unit (HASU) at University College London Hospitals (UCLH) sought to improve the support given to stroke survivors, with the aim of empowering patients, their families and carers with information pertinent to what happened when the stroke occurred, as well as what to expect throughout their rehabilitation and how to manage their health and reduce the risk of secondary stroke in the future.
Currently, most patients have access to general information about strokes that are non-specific, non-local, not tailored to their specific concerns, their ethnicity or social background and not from a trusted source. Recognising the complexity of strokes due to the different types and causes, the wide range of treatments and rehabilitation available, and the diverse patient demographic, UCLH were hoping to provide health information in a personalised way that fills the gap 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 patient’s home rather than in the clinic setting, increasing medication adherence, and reducing unexpected hospitalization following discharge.
Cognitant supported UCLH to develop a digital support centre (DSP), called ‘My Stroke Companion’. The digital support package is live on the Healthinote platform, containing tailored information bespoke to each stroke survivor discharged from the UCLH HASU.
‘My Stroke Companion’ enables clinicians to create a bespoke and personalised information prescription based on a patient’s individual needs. It is personalised by clinicians through the completion of a simple checklist on Healthinote, selecting information relevant to their patient. This includes the type of stroke they have had, rehab or treatments recommended, medicines prescribed, conditions relating to stroke, follow-up tests and contact details of their stroke team.
When submitted, the checklist automatically populates a cover letter (which can be reviewed/checked and input into the patient’s electronic health record). The clinician can then send this via email, SMS, or present a QR code to their patient.
The patient can then access ‘My Stroke Companion’ with their unique information prescription content via the Healthinote platform, on smartphones, tablets or desktop. The companion can be used to ensure that patients and their support networks have access to relevant and reliable information. It is the result of brand-new visual and interactive content created in house, and high-quality and trusted information from approved external stakeholders – The Stroke Association, Headway and Different Strokes. Patients can thus learn about their conditions from trusted sources thoroughly at their preferred setting, speed, and language, including Hindi, Bengali, Polish, Turkish and Gujarati.
The design approach:
The project started with a 6-week intensive discovery phase to understand the unmet needs of stroke survivors and their caregivers and family members. Clinicians, patients and their family members were consulted throughout the design phase via focus groups, 1:1 interviews and surveys to ensure that the hub was built on a solid evidence-base of lived experience and made gaps in the current information base accessible after desk research was conducted to understand the current information landscape .
The co-creation process concluded the following needs for ‘My Stroke Companion’:
- Minimalist, easy-to-use layout to cater for people who may have pre-existing or acquired reading or learning difficulties
- Personalised information, relating to:
- type of stroke and post-stroke symptoms
- what to expect following discharge
- rehabilitation and guidance on healthy lifestyles
- medication and tests that patients may undergo (such as MRI)
- local support groups and hospital contact information
A 3-month development period followed to develop the personalised, interactive ‘companion’ of information tailored to each person’s stroke and their medication and rehabilitation plan. These include explainer videos and visual content to help users fully understand and memorise information. Links to further support organizations and contact details of the medical teams are also provided if the patient seeks further help on lifestyle changes (such as quitting smoking) or come across any future queries.
Information prescriptions have been issued by clinicians to patients over a 2-month period, and patients were able to share with family members and carers as appropriate. During that period, 127 users have accessed ‘My Stroke Companion’ 233 times (showing an engagement rate of 1.8 visits per user). Users viewed over 6 pages each, spending nearly 14 minutes navigating around ‘My Stroke Companion’ and engaging with key content relevant to their stroke and care plan. Independent evaluation completed by Candesic demonstrated that ‘My Stoke Companion’ has been deemed to be acceptable by patients and family members and fills a gap in the market.
“As a central repository it was great as we were googling lots of things and trying to figure it all out.” –Patient
Plans for future development:
Following a successful pilot, UCLH with Cognitant plan to expand My Stroke Companion to cover additional topics such as TIAs, personalised risk factors for further stroke, more holistic support such as returning to work, applying for benefits and managing personal relationships. Future improvements also include updating personalization as patient progresses through recovery, and adding features such as reminders and push notifications. The Phase 2 project will be set across a 12-month period, 500 patients will be recruited including 300 patients from UCLH and 50 patients from four new regions. Participant consultation, formal user testing, the ongoing collection engagement metrics, and an openness to improve, will enable us to iteratively develop a solution that is acceptable to stroke survivors and those supporting them.
A number of necessary improvements have been identified to ensure the tool is integrated easily into the stroke pathway:
- Prescribing of the hub (personalising the hub via an online tool and providing a link to each patient in their discharge summary) requires integration with the clinical system to streamline the process
- A more efficient way of recording the information prescription into the patient health record is required to ensure the full MDT have access to what information the patient has received, to ensure coordination of care and continuity in education
- Future improvements should include the ability to update the personalisation as a patient progresses through the pathway and their recovery, ensuring information is always up to date (reminders)
Discover more about Cognitant:
Cognitant Group is a healthcare technology company that improves patient outcomes and optimises consultations through personalised, immersive, patient-centric health information about health and treatment. The company works with the NHS, patient advocacy groups, life science companies and care providers to empower people to manage their health more effectively. Cognitant Group’s data-driven information prescription platform, Healthinote, saves clinician time, improves patient reported outcomes and reduces unnecessary complications across many care pathways.