New virtual supports available for MND during Covid

Back in March 2020, the Health Research Board (HRB) in cooperation with the Irish Research Council (IRC) launched the COVID-19 Rapid Response Call to fund research to provide evidence for the national and global efforts to deal with the virus outbreak. The funding process was a highly competitive one and several awards were received by Trinity investigators.

One such project, led by Professor Orla Hardiman, from the Academic Unit of Neurology at the School of Medicine was to provide virtual support for patients with Motor Neuron Disease (MND).

Professor Hardiman and her clinical and research team at Beaumont Hospital and Trinity College Dublin launched a rapid response to manage MND (Motor Neurone Disease) during the COVID-19 pandemic. The need for remote monitoring and delivery of highly specialised care, away from a hospital setting, became vital to protect vulnerable MND patients when Covid-19 hit. Using their collaborator Sheffield Teaching Hospital’s system TiM, and working with the UK company, Advanced Digital Innovation (ADI) to produce the specialised TiM MyPathway app has enabled Professor Hardiman’s team to manage their patients digitally.

MND Patients and caregivers often find travelling long distances to their appointments arduous, not only that but when they arrive at the clinic the waiting time can be considerable. Trinity College Dublin’s data indicated that prior to COVID-19 a large proportion of the patient’s time in the clinic (70%) was spent waiting for review by members of the multidisciplinary team, with only 30% of time spent in meaningful engagement with clinical professionals. Trinity College Dublin’s patient journey data also indicates that community based clinical professionals have limited experience of MND, therefore patients and caregivers may struggle to access the expertise required between clinic visits and may receive advice that is not in keeping with best practice. All these problems have been considerably magnified by the recent COVID-19 pandemic.

TiM on MyPathway addresses the issues of restricted visits to clinic during COVID-19, the need to plan clinics in advance to minimise waiting times and the need to communicate with services locally to ensure a standardized quality of care.  The platform allows patients and their caregivers to report their progress and symptoms from their homes using a remote digital application. Clinicians can remotely monitor their patient and are alerted to any concerns or changes in their condition. Information leaflets and resources developed by the Irish Motor Neurone Disease Association (IMNDA) are linked to the TiM system ensuring patients access reliable and useful information.

The ADAPT Centre is the Science Foundation Ireland Research centre for AI-Driven Digital Content Technology. The ADAPT Centre sees the possibility of interoperability between TiM on MyPathway and the Patient Data Display Platform by building an API that allows the ingestion of data from the TiM on MyPathway app. This data could be used to further enrich the knowledge graph and Patient Data Display Platform outputs and is something the ADAPT Centre would hope to pursue. The ADAPT team have been working with Orla Hardiman’s team to develop an ontology and schema to accommodate data from a variety of different sources that can be uplifted to a knowledge graph. This data interrogation will be output through a variety of visualisations via a patient data display platform.  These outputs will allow the clinicians to view and assess a particular patient’s data or group of patients’ data utilising a range of data points and timelines.

Professor Orla Hardiman, Professor of Neurology, Trinity College Dublin, said: “This important telehealth project will meet the needs of vulnerable patients and families with progressive neurologic disease whose care is compromised as a direct consequence of the disruption imposed by the COVID-19 pandemic. In the longer term, the work will help to address the considerable fragmentation of care in Ireland. We will have a sophisticated communication system between patient/caregivers and their health care professionals in hospital and community settings.”

TiM on MyPathway’s purpose in the short term will be to meet the immediate needs of vulnerable patients and families that have been directly affected by COVID-19. However, beyond the pandemic, TiM on MyPathway will address the current division of knowledge collection and sharing, it will enable a communication trail between service users (patient/caregivers) and health care professionals. Whilst COVID-19 accelerated the transformation to remote monitoring, it is making a real difference to those living with MND and is ensuring that they will continue to receive the highest quality of care.