Contributor(s)

Jarnail Chudge, International Alliance of ALS/MND Associations

Description

The International Alliance of ALS/MND Associations is engaged in research projects that focus on understanding the importance and significance of cultural activities in improving quality of life for people living with ALS/MND (PALS) and their caregivers (CALS). In an environment where there is significant global iniquity in access to information and care and affordable technologies, the Alliance is being increasingly challenged to provide leadership and direction to the broader community because of its unique perspective as a truly global organisation.

Through a “design-thinking” approach, the Alliance is bringing together tangible examples of how innovation in technology relates to the creation of art, music, games, etc., allowing the pursuit of creative interests for PALS. Using Maslow’s hierarchy of needs and insights from the Alliance’s bi-annual Fundamental Rights survey, this research focuses on personalizing the experience of PALS. By bringing individual needs to the forefront, we aim to enhance quality of life and potentially transform their journey based on their unique objectives and desires. In support of this, there are a number of technologies such as Artificial Intelligence (AI), robotics, Brain Computer Interaction (BCI), Augmented Reality (AR) and Virtual Reality (VR), home-automation systems, communication and voice-preservation technologies, which represent new opportunities regarding the value and contribution they have the potential to make to improving Quality of Life for PALS and CALS around the world. However, in equal measure, they can be said to pose challenges and raise important questions about fair use, ethical handling of data, security and privacy, equitable access at a global level, and the impact they may have on our “human-ness”!

Through this lens of personal, cultural, and social dimensions, the Alliance has taken Maslow’s model (using the later eight-layer model encompassing the range of needs from physiological, safety, love and belonging, esteem, self-actualisation, cognitive, aesthetic all the way through to transcendence) and developed the Personal Needs Matrix. This matrix supports the design and development of an individualised and personal framework for each PALS and CALS to help them understand where they are on their journey and identify the specific areas where they will benefit from the most. Example areas include voice-banking, hygiene, nutrition, creative pursuits, spiritual development, etc.

Each of the 8 layers has been broken down into sub-categories and mapped against established personas representative of the different stages and types of ALS/MND. Each intersecting area is populated with a range of technology solutions. Further, when viewed through the lens of global access, industry investment, and academic research interests, it provides a view of the current state of these technologies and identifies areas where there are gaps to be filled.

Our approach within the Alliance to this, has been to ensure the Personal Needs Framework is closely tied to and cross-referencing the findings and insights from our bi-annual Fundamental Rights survey, to ensure that what we do is aligned with the Alliance’s overall mission and goals, serves our member organisations around the world, and makes a measurable improvement to the quality of life of PALS and CALS globally. The Fundamental Rights survey is built on the values and principles which inform the work and approach of the Alliance. Our values of “human-centric” places emphasis on fairness in representation, inclusion, and accountability which help ensure we are driven by PALS and CALS; “knowledge-sharing” is focused on being transparent, timely, data which open and supports interoperability, which in turn makes it replicable, and finally, being “trustworthy” which comes down to being reliable, ensuring our compliance process are private and secure, and advocating for the re-use and sharing of information in support of research which is correctly attributed and acknowledged.

This was instantiated through the design and development of a “Day in the Life Of” experiential suite which comprised setting up a suite at the Alliance conference venue where we brought together a range of devices, technologies, adaptations, innovations which in one way or another were all designed to make a difference to quality of life. Through collaboration with partners, suppliers, researchers, technology companies– all of whom play a role in the activities and routines of day-to-day living for PALS and CALS – they were invited to attend and demo their products and services. The products and services represented both physical and digital devices and technologies and included items such as an eating assistant, a bidet, a thermostat run by eye gaze, a voice preservation system, and a virtual reality gaming system allowed access to gaming which would otherwise be inaccessible. Conference attendees were invited to experience the room with the goal of exposing the entire audience of the conference over the days to what the spectrum of possibilities are.

The Alliance believes that this ground-breaking approach will provide access to each person on where they are on their personal journey and enable them to relate to the different layers at a uniquely deep and personal level with the aim of contributing to enhancing and enriching quality of life.

Presenter(s)

Jarnail Chudge