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Message posted on 05/07/2021

CFP for the Special Issue on Designing Digital Technologies for the Lifespan of People with Neurodegenerative Conditions


CFP for the Special Issue on Designing Digital Technologies for the Lifespan of People with Neurodegenerative Conditions

To appear on Frontiers in Digital Health


Deadline: 13 October, 2021 More information: https://bit.ly/SINeuroLifespan

BACKGROUND: Neurological disorders represent a growing global health challenge, with the World Health Organisation classifying them as the leading cause of disability adjusted life years, and the second leading cause of death, in their 2016 Global Burden of Disease study. Neurodegenerative conditions (e.g. Parkinson’s disease, Huntington’s disease, Alzheimer’s disease, Motor Neurone Disease, Multiple Sclerosis) are particularly complex due to their progressive nature, meaning that symptoms must be continuously monitored and treatments adjusted. Individuals living with a neurodegenerative condition, and their loved ones, become experts in their own condition, conducting daily self-monitoring and management practices and making adjustments to their lives to support changes in symptoms and function. Aside from physical changes that they are required to navigate, there are also a range of socio-emotional challenges to manage, including social stigma, mental health issues, behavioural changes related to cognitive decline, and perceived loss of control.

Advancements in wearable and sensing technologies have allowed more longitudinal monitoring of symptoms, opening up possibilities for technology to measure disease fluctuation and progression. Despite this opportunity, these sensor-based approaches are heavily reliant on user contribution and can be invasive over long periods of time. They also often only engage individuals in passive collection of data, with data supporting clinical decision making. There is a need for work which involves individuals more actively in the process, to enhance a sense of control, facilitate the daily self-care practices that individuals and their loved ones carry out, and improve shared decision making with their clinicians. In addition, technologies tend to be designed (and often evaluated) with people in the early to mid-stages of their condition, failing to reflect the diversity of experience of those in the later stages and reducing the accessibility of possibly beneficial solutions to a broader set of users.

TOPICS OF INTEREST: This issue aims to highlight work which has considered the design of technologies to support people with neurodegenerative conditions across the lifespan of their condition. Possible themes may include (but are not limited to):

  • Work attempting to address the usability and accessibility of technology at different stages of progression
  • New or adapted design approaches that support the engagement of people with more advanced disease states
  • Novel examples of technologies that support shared decision making between people with neurodegenerative conditions and their clinicians
  • Adaptive or customisable technologies that support self-care practice across the lifespan of the disease
  • Studies which draw upon the ethical considerations of working with people with neurodegenerative conditions in design led research
  • Work that has actively considered long-term data legacy, consent and data ethics, particularly in the case of cognitive decline
  • Advancements in monitoring algorithms or systems which have been trained on people at all stages of the disease

IMPORTANT DATES:

  • Full paper submission deadline: 13 October, 2021
  • Publication: on a rolling basis

    Authors are encouraged to send an abstract for feedback on the fit of the study to the issue.

SPECIAL ISSUE EDITORS: Roisin Mcnaney, Monash University Julio Vega, University of Pittsburgh Kellie Morrissey, University of Limerick Francisco Nunes, Fraunhofer Portugal AICOS Chris Moran, Monash University


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