Patient and carer involvement at the heart of TeleRehaB project

The TeleRehaB Decision Support System (DSS), supported by European Union and UK Research and Innovation (UKRI) funding, is an international partnership for developing artificial intelligence (AI) solutions for people experiencing balance issues after a stroke, or people experiencing Mild Cognitive Impairment (MCI) or long Covid-19.   

As part of the project, the Health Innovation Network South London (HIN) is running a series of workshops for professionals, patients and carers to provide feedback to the clinical and technical teams, which will be used to shape the development of the project. Karla Richards, Senior Project Manager for Innovation, reflects on key insights from the latest workshop and the importance of patient involvement for research and innovation in this field.  

In the UK, 1.3 million people have survived a stroke. However, up to 73 per cent of people who have had a stroke experience a significant fall within one year. Many of these people experience balance issues, as the body is affected by symptoms including weakness, a loss of sensation and vertigo. Balance retraining exercises and physiotherapy are key to improving the lives of people experiencing balance issues. TeleRehaB is developing an AI-based Decision Support System to support effective and affordable balance rehabilitation for patients experiencing balance issues after a stroke, or people experiencing Mild Cognitive Impairment (MCI) or long Covid-19. 

In July, we hosted the TeleRehaB Patient and Carers event in London, bringing together an international group of researchers to gather feedback from patients with a balance issue and the carers of people with a balance issue. During the event, researchers demonstrated the TeleRehaB system, a collection of new Augmented Reality (AR) solutions that will assist the rehabilitation of people with Vestibular (balance) issues. The group of patients and carers were then invited to try out the technologies and share their feedback.  

The patient-facing Telerehabilitation system consists of a mobile app, a set of sensors to be worn on the body and an AR headset. There is also a Clinician Dashboard, which captures patient data and shares it with the patient’s physio or clinical team to support decision making and monitoring. The TeleRehaB system will empower patients to complete their balance rehabilitation with the support of a virtual “physiotherapist” from their home or another convenient setting. This will save time and money, as clinicians will work with the patient remotely, monitoring progress and making updates to rehabilitation programmes through the Clinician Dashboard. It also makes rehabilitation programmes more accessible, as patients that cannot easily travel can complete their exercises at home or another location.  

At the Patient and Carer event, the latest version of the TeleRehaB system was tried out by attendees who were split into two groups and supported by the TeleRehaB DSS team to test the solutions. One group began with the TeleRehaB patient mobile app, designed for patients to self-manage their rehabilitation and the use of the Telerehabilitation system. The app sends reminders for daily tasks, prompting patients to complete their exercises. The testing was followed by a feedback session and survey, where participants reflected on their experiences using the app and whether it could be integrated into their daily routines. Participants commented on the ease of navigation in the app but there was some confusion over how the notifications appeared on screen, and how some of the prompts were unclear.  

The second group started with the body sensors and AR headsets. Participants completed numerous “exergames” to test their balance, whilst sitting down and standing up. “Exergame” is a term used in rehabilitation to describe games that make you exercise. At the event, one of the “exergames” saw patients bobbing their heads to point at and follow virtual objects as they changed position in the room. The patients and carers were particularly enthusiastic about these interactive technologies. In the feedback, they expressed that they were a fun and engaging way to test their balance and monitor their progress. However, there were also comments on the need for clearer instruction to understand each game and the comfort of the headsets. Several participants were surprised to discover that distance glasses made it hard to see the games, whilst others were concerned their reading glasses would not fit inside the headset.  

The feedback collected at the Patient and Carer event is now being used by the TeleRehaB team to steer the development of these technologies, as individual solutions and a whole system. For example, the mobile app developers were so excited by the authentic feedback they received, that following the event they immediately created some new mock-ups of the screens for the app. The workshop highlights the importance of patient involvement for innovations, especially through different stages of development, as patients can highlight new perspectives, preferences and barriers to real-world integration that would have otherwise been overlooked. This feedback has been critical for the development of the TeleRehaB system, which will be entering a multi-site clinical trial in the next stage of the project. 

Watch the TeleRehaB DSS Patient and Carer event highlights video to learn more about the event. 

For more information about the TeleRehaB DSS project and its partners, visit https://telerehab-project.eu