February 2023: The first personalised educational package for patients living with stroke, My Stroke Companion, launched in December last year, marking the start of a year-long trial. The project aims to reduce health inequalities, by connecting people with personalised health information to help them manage their condition in a way that suits them. Currently launched at University College London Hospitals NHS Foundation Trust (UCLH), the project will be extended to a further four trusts later this year.
My Stroke Companion was co-created and piloted by UCLH and patient information specialists, Cognitant. It is the first time visual and interactive content has been individualised to a patient’s type of stroke, their medication, symptoms and local support services available to them, increasing the personalisation of care to reduce health inequalities for stroke patients.
The large-scale trial with 500 patients – the first of its kind to take place – follows a successful smaller-scale pilot of the personalised digital support package by the UCLH hyperacute stroke unit. Both pilots are being funded by the government’s Small Business Research Initiative (SBRI), with more than £500,000 being awarded to fund the project.
“We wanted to work with Cognitant to develop My Stroke Companion because currently, there is a real lack of personalised support that is offered to stroke survivors, and we feel that the project is capable of bridging this gap,” says Dr Robert Simister, clinical lead for the My Stroke Companion project at UCLH.
As part of the trial each patient will be issued a personalised information prescription, which they can share with family members and carers, helping them to manage their condition. Explainer videos and visual content help users to fully understand and memorise information about their condition. Links to further support organisations and contact details of medical teams are also provided if the patient seeks further help on lifestyle changes, such as quitting smoking.
“People who currently get the most from post stroke care tend to be articulate, well-educated and well supported accessors of healthcare. This new educational platform will provide everyone with the right information, at the right level and in the correct language, allowing more people to understand their stroke and increase their likelihood of recovery,” Dr Simister explains.
Accessible content is especially important in stroke, as patients may struggle to take in information due to tiredness or fatigue, or difficulties processing information from the effects of the stroke. This is even more difficult for patients who also experience language barriers or have pre-existing communication needs.
For the first time, personalised support will be provided for every stroke survivor and their family to help them navigate barriers that arise as a result of life with stroke. This includes understanding the type of stroke that has occurred, why it happened and how to prevent a further attack, as well as understanding the treatments that are planned, updates on treatment developments and the recommended lifestyle changes to optimise recovery. “The information, which will be 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,” said Dr Simister.
The new pilot aims to trial My Stroke Companion with patients and their families in a variety of different communities, including rural areas. Three hundred patients will come from UCLH with a further 200 from four other NHS trusts, including North Bristol NHS Trust.
My Stroke Companion was developed using trusted and high-quality information from The Stroke Association, Headway and Different Strokes. Patients can learn about their condition from these trusted sources at their preferred setting, speed, and language, including Urdu, Punjabi, Polish and Nepalese, which are the most widely spoken languages in the UK after English.
Daisy Allington, Chief Operating Officer of Cognitant, said, “We’re very excited about My Stroke Companion, not just because of the huge benefits for stroke patients, but because this trial will enable us to develop personalised services to aid patients with other long-term conditions and their families.”
After the trial, Cognitant and UCLH hope to evolve My Stroke Companion to dynamically update with the patient journey. For example, to provide new information as the patient changes medication.
Dr Phil Clatworthy, Consultant Stroke Neurologist and Chief Clinical Informatics Officer (CCIO), Neurology department at the North Bristol NHS Trust, said,
“NHS services often struggle to communicate the information that people want and need after such a sudden and life-changing event as a stroke. I’m excited to be working with Cognitant on My Stroke Companion; this is a big opportunity to provide people with personalised, relevant and accessible information after stroke, helping them to understand and gain more control over their condition.”