MIRANDA: Multidisciplinary Innovation and Research Advancing Neurological care in a Digital Age
MIRANDA is a five-year collaborative doctoral award (CDA) programme funded by the Health Research Board (HRB), which commenced in May 2022. A consortium of experts in research and practice have created a comprehensive training programme for healthcare professionals, to develop expertise in innovative approaches to multi-disciplinary care for patients with complex neurological conditions and their families, while addressing caretaker burden. Five PhD research scholars, who joined the programme between October 2022 and March 2023, will build from the foundations of previous research by the consortium and progress the implementation and empirical assessment of telehealth systems in partnership with the HSE. The research will focus on Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND) as an exemplar for a complex condition requiring specialist multidisciplinary care.
1. ALS CREATE - Connected Rehabilitation-Enablement, Acceptability & Therapeutic Effectiveness
Avril Mc Tague is the PhD scholar working on this project. Her background is in clinical Physiotherapy, with expertise in neurological rehabilitation. She is supervised by Dr Dara Meldrum and Dr Damon Berry.
Digital health is acknowledged as being a workable solution to the worldwide problems of increasing healthcare burden, insufficient clinicians and lack of expertise, particularly in rare diseases where infrequent exposure is a barrier to optimal care. The aim of this project is to systematically build and evaluate a novel digital rehabilitation platform for ALS. The PhD scholar will be trained to become an independent researcher in digital health applications, with rehabilitative interventions for ALS as the primary focus. At the end of the four years, the project aims to have available a prototype rehabilitation platform, accompanied by initial clinical evidence on its use.
2. Information flows in specialist MDT clinics
Ruairí Weiner who has a background in Anthropology is the PhD scholar working on this project. He is supervised by Dr Miriam Galvin, Dr Gaye Stephens and Prof. Orla Hardiman.
Multidisciplinary care is recommended in ALS with research showing benefits to survival and indications of improved quality of life. The generation and transfer of information between clinical disciplines that this model of care facilitates may be a mechanism through which benefit accrues in terms of patient care and disease outcomes. This project involves an examination of the exchange and synthesis of information within a multidisciplinary healthcare context; and exploration of ways in which these factors could be facilitated and optimised using digital solutions. This transdisciplinary project includes methods from computer science, health services research and anthropology in the development of information models and designs of human-centred solutions to support healthcare professionals providing care to people with ALS.
3. Challenges in Care Provision in ALS: Health Care Professionals
Megan Walls is the PhD scholar who will work on this project. Her background is in Occupational Therapy with a special interest in palliative care. She is supervised by Dr Miriam Galvin and Dr Austin Claffey.
Professional engagement with physical, psychological, and emotional requirements of people with ALS can be challenging, distressing and burdensome for Health Care Professionals (HCPs) and family members. However, the emotional burden for health-care professionals is under-recognised, and there is a need for structures and procedures to address professional boundaries, compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care. By harnessing insights from our studies of formal and informal caregiver burden in ALS, this project is designed to explore and identify the personal and professional challenges experienced by HCPs as they engage with patients with ALS in the context of the patient/caregiver journey, through management of progressive cognitive, behavioural and motor decline to end of life decision-making.
4. Development and validation of digital outcome measures for sensitive assessment and remote monitoring of speech and swallow in ALS
Lesley Doyle who is a specialist Speech and Language Therapist, with expertise in clinical management of ALS, is the PhD scholar for this project. She is supervised by Dr Deirdre Murray and Prof. Orla Hardiman.
Disease progression in ALS is traditionally measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale - revised (ALSFRS-r). The emergence of advancements in technologies including biosensors and cloud computing provides opportunities for sensitive, reliable assessment of disease progression and patient symptoms beyond the limitations of the traditional scale. New technologies also have the potential to reduce the burden of travel to specialist clinics through enablement of remote monitoring. This project will build upon prior work in patient, carer and healthcare professional consultation on measurement in ALS using devices and technology. New measurement solutions will be systematically identified, and commercially available technologies for measurement of relevant impairments will be examined.
5. Maximising the clinical utility of the Telemedicine in MND (TiM) patient-clinician remote monitoring and communication system
David Murphy, who has a clinical background in Physiotherapy and a special interest in telehealth is the PhD Scholar for this project. He is supervised by Dr Deirdre Murray and Dr Lucy Hederman and will work closely with colleagues in the University of Sheffield, where TiM was developed.
In response to the Covid-19 pandemic the Irish ALS multidisciplinary team engaged in rapid innovations and adoption of new technologies, including a remote patient monitoring app developed by core partner McDermott and colleagues. The TiM (Telemedicine in MND) system prompts patients to enter relevant Patient Reported Outcome Measures (PROMS) and simple metrics such as weight and cough strength, which can be viewed remotely by clinicians. This project will work towards optimisation of the design of the TiM remote monitoring system to enable remote collection of accurate and meaningful metrics to guide timely clinical care and to ensure maximal use of this data.
Dr Miriam Galvin (Principal investigator) Email: firstname.lastname@example.org
Dr Miriam Galvin has a multi-disciplinary academic background in human geography (MA), community health (MSc), mediation (PGDip) and psychosocial studies (PhD). Dr Galvin’s research interests are the contextualisation of health care and illness experiences using social theoretical, qualitative and mixed methods approaches; research methodologies; health services research; medical anthropology; medical/health humanities, and discourse.
Prof. Orla Hardiman (MIRANDA programme co-lead) Email: email@example.com
Prof. Orla Hardiman is Head of the Academic Unit of Neurology at TCD and Consultant Neurologist at Beaumont Hospital, Dublin. She is Director of the National ALS service, a clinic that provides direct care for over 80% of Irish patients with ALS. She is Director of the Irish ALS/MND register, and leads research in neurodegeneration, with focus on ALS and frontotemporal dementia.
Dr Deirdre Murray (MIRANDA programme co-lead) Email: firstname.lastname@example.org
Dr Deirdre Murray MISCP (PhD) holds the McKeon Assistant Professor in Clinical Measurement post in the Academic Unit of Neurology at TCD and is the Clinical Specialist Physiotherapist in ALS in Beaumont Hospital, Dublin. Research interests include multidisciplinary management and clinical measurement of patients with ALS and other neuromuscular conditions and the incorporation of
technology-based solutions and telemedicine into clinical care. Other areas of interest include spasticity management and vestibular rehabilitation.
Dr Dara Meldrum Email: email@example.com
Dr Dara Meldrum is a Physiotherapist and Associate Professor of Clinical Measurement and Device Technology at the Academic Unit of Neurology at TCD. She specialises in vestibular and neurological rehabilitation. Her research interests are in building and evaluating technologies that facilitate easier access to rehabilitation and in discovering how to deliver improved and cost-effective rehabilitation outcomes for individuals with neurological disease.
Dr Austin Claffey Email: firstname.lastname@example.org
Dr Austin Claffey is a Senior Lecturer in Occupational Therapy and Course Director for PGDip/MSc Occupational Therapy in Southbank University, London. His area of expertise includes how neuropsychological impairment translates to functional ability and rehabilitation strategies.
Dr Lucy Hederman Email: email@example.com
Dr Lucy Hederman’s main interest currently is in incorporating clinical guideline knowledge into electronic health care records, and in the design of ICT systems to leverage existing organisational data and documents in support of knowledge work. Other interests include knowledge-based systems and knowledge management, clinical decision support systems, and online community site design.
Dr Gaye Stephens Email: firstname.lastname@example.org
Dr Gaye Stephens is an Assistant Professor in Computer Science in the ADAPT centre in TCD and has expertise in e-health information design, with an emphasis on patient centricity. She is a board member of the Irish Platform for Patient Organisations, Science and Industry (IPPOSI). Her current research interests concern citizen and public engagement to capture and analyse citizen and public informed preferences for sharing and accessing health information.
Dr Damon Berry Email: email@example.com
Dr Damon Berry is a lecturer and researcher in the School of Electrical & Electronic Engineering at TU Dublin. Over the past 25 years, he has engaged in and supervised research in the broad areas of e-health and smart spaces. He is a member of NSAI TC21 (Health Informatics Standards Committee) and has represented NSAI at ISO and CEN meetings. He has particular research interests in health informatics, biomedical engineering, assistive technology and responsive outdoor spaces.
Dr Sinead Impey Email: firstname.lastname@example.org
Dr Sinead Impey works in the ADAPT Centre, TCD and has expertise in eliciting expert knowledge (tacit and explicit) and development of a knowledge bank for ALS as a rare disease.
Prof. Christopher McDermott
Prof. Christopher McDermott is the Professor of Translational Neurology at SITraN, an NIHR Research Professor and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust regularly undertaking specialist ALS and neuromuscular clinics in Sheffield. The main drive of Prof. McDermott’s research programme is evaluating the new treatments for ALS. He is also passionate about developing the evidence base for delivering supportive and symptomatic care for patients living with ALS now.
Ms Naomi Fitzgibbon
Ms Naomi Fitzgibbon is the Director of Nursing and Services at the Irish Motor Neurone Disease Association (IMNDA). She is an expert patient advocate, representing the voice of clients and family. She is committee member of the National Healthcare Quality Reporting System (NHQRS), which gives an overview of quality in our health service.
Ms Loretto Grogan
Ms Loretto Grogan has a background in Nursing and is the lead on the HSE National Clinical Information for Nursing and Midwifery programme.
Prof. Leonard van den Berg
Prof. Leonard van den Berg is the Professor of Neurology at the University Medical Centre Utrecht, The Netherlands and is the chair of TRICALS (https://www.tricals.org/en/)
Name: Adelais Farnell Sharp Email: email@example.com