Amyotrophic Lateral Sclerosis (ALS) or Motor Neurone Disease (MND) is a degenerative disease of the nervous system, which affects one in 300 people in Ireland. Those affected lose their ability to use their arms, legs and voice, and eventually their ability to breathe. Some people also experience changes in thinking.
There is extensive evidence that the best outcomes for patients are achieved in a multidisciplinary setting, where healthcare professionals work together. We need to meet future healthcare challenges by training expert practitioners, traditionally trained within their own discipline, to work effectively as a multidisciplinary team. We must understand the components of multidisciplinary care operating in a sustainable and patient-centred way, by ensuring that the knowledge within clinics is retained, while maximising new opportunities provided by technologies in terms of ehealth and devices. There is also a need to acknowledge and address the challenges encountered by health care professionals.
Our consortium of expert health care practitioners and research academics have designed a comprehensive training programme for healthcare professionals. The training programme includes:
creation of an evidence-based eHealth solution for delivery of neuro-rehabilitation,
development of a knowledge bank representing MDT members knowledge and decision-making processes,
evaluation of professional burden in healthcare professionals and development of guidelines for management,
validation of novel outcome measures for clinical meaningfulness,
design and clinical integration of digital technology to facilitate communication and remote monitoring of disease progression,
implementation of innovative, user-friendly solutions for care.
It is the vision of the Consortium that this programme of research will provide comprehensive training for future clinician leaders and will integrate research outcomes with telehealth systems under development by the HSE. This will allow different clinical specialties to combine smart tailored solutions, minimizing burden of travel for patients and families, while retaining and expanding the benefits of cutting-edge multidisciplinary care.
