Beaumont Hospital in collaboration with Trinity College Dublin have launched an innovative telehealth solution to assist with managing MND (Motor Neurone Disease) during the COVID-19 pandemic. The initiative headed up by Professor Orla Hardiman, Head of the Academic Unit of Neurology at Trinity College Dublin and Consultant Neurologist at Beaumont Hospital, is funded by the HRB as a rapid response to the COVID-19 project and its impact will be analysed over the coming year.
The need for remote monitoring and delivery of highly specialised care, away from a hospital setting, became vital to protect vulnerable Motor Neuron Disease patients when COVID-19 hit. 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 indicate 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.
Using Sheffield Teaching Hospital’s system TiM, which has been developed by leading digital healthcare company ADI, TiM on MyPathway enables the specialist MND service in Beaumont to monitor and manage their patients digitally. 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.
ADAPT has been working with Prof. Hardiman and the teams at TiM on MyPathway, to examine the 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. The team will develop an ontology and schema to accommodate data from a variety of different sources that can be uplifted to a knowledge graph. 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. This data interrogation will be output through a variety of visualisations via the 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 a 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.
