JMIR Publications

ABSTRACT

Despite recent and compelling technological advances, the real-world implementation of remote digital health technology in care and monitoring of patients with motor neuron disease (MND) has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of the patients’ ability to visit the clinic. To facilitate wide-scale adoption of digital healthcare technology, and to align current initiatives, we outline a roadmap that (1) will identify clinically relevant digital parameters, (2) mediate the development of benefit-to-burden criteria for innovative technology and (3) direct the validation, harmonization and adoption of digital healthcare technology in real-world settings. We define two key end-products of the roadmap: (1) a set of reliable digital parameters to capture data, collected under free-living conditions, that reflect patient-centric measures and facilitate clinical decision-making, and (2) an integrated, open-source system that provides personalized feedback to patients, healthcare providers, clinical researchers and caregivers, linked to a flexible and adaptable ICT platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of MND, the adoption of digital healthcare technology will significantly benefit the delivery of care and accelerate the development of effective treatments.