TY - JOUR
T1 - A road map for remote digital health technology for motor neuron disease
AU - van Eijk, Ruben P. A.
AU - Beelen, Anita
AU - Kruitwagen, Esther T.
AU - Murray, Deirdre
AU - Radakovic, Ratko
AU - Hobson, Esther
AU - Knox, Liam
AU - Helleman, Jochem
AU - Burke, Tom
AU - Rubio Pérez, Miguel Ángel
AU - Reviers, Evy
AU - Genge, Angela
AU - Steyn, Frederik J.
AU - Ngo, Shyuan
AU - Eaglesham, John
AU - Roes, Kit C. B.
AU - van den Berg, Leonard H.
AU - Hardiman, Orla
AU - McDermott, Christopher J.
N1 - Funding Information: JE has a commercial interest in promoting the future use of remote digital technology platforms in Motor Neurone Disease. CJM has undertaken consultancy work for Biogen, Orion, Orphazyme, Merz and is supported by the NIHR Sheffield Biomedical Research Centre (BRC). SN is supported by the FightMND Mid-Career Research Fellowship. The remaining authors have no conflicts of interest to declare.
PY - 2021/9/22
Y1 - 2021/9/22
N2 - Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease 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 patients’ ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (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, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.
AB - Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease 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 patients’ ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (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, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.
KW - Amyotrophic lateral sclerosis
KW - Digital health care technology
KW - E-health
UR - http://www.scopus.com/inward/record.url?scp=85115949055&partnerID=8YFLogxK
U2 - 10.2196/28766
DO - 10.2196/28766
M3 - Article
VL - 23
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
SN - 1439-4456
IS - 9
M1 - e28766
ER -