Reducing the communication barrier between ALS patients and their family/caretakers by creating a visual language in the form of icons, using virtual reality

Prof. Mandar Rane (IDC, School of Design, IIT Bombay)

Prof. Braj Bhushan (HSS, IIT Kanpur)

Apoorva Savant (Insider.in, Mumbai, India)

Sachit Shyam (Samsung R&D, Bangalore, India)

“Creation of a standardized visual vocabulary through design of icons help tackle multilingual barriers and create new communication possibilities.”

Second Image

Figure 1: Daily core needs

Figure 2: Testing of the icons Figure 3: ISO Standardization test results

Figure 4: Icon design Figure 5: Icons implemented onaccordions and cards

What is ALS?

A set of icons pertaining to a patient’s primary, secondary and tertiary needs

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease, is a specific disorder involving death of neurons that control voluntary muscles in humans. Although every individual deteriorates at a varied pace, patients affected by this disorder ultimately lose their ability to initiate and control all voluntary movement. Only bladder, bowel function and the muscles responsible for eye movement are usually spared until the final stages. The disease also causes speech impairment.

IntroductionAs a consequence of neural degeneration, ALS patients find it very difficult to communicate with people in their surrounding including their family members and caregivers. Our observation and interaction with the stakeholders (patients, families, doctors, caregivers) confirmed that the process of establishing communication with respect to the patient’s daily needs is very tedious and frustrating. In order to resolve this barrier, we envisaged the creation of a visual vocabulary.

Methodology and ImplementationWe approached the stakeholders to provide us with the patient’s needs. Realising that the list of needs is endless, we decided to focus on a patient’s daily core needs. After discussions with the stakeholders, we shortlisted needs pertaining to food, movement, hygiene and sanitation under three categories: primary, secondary and tertiary. After analysing the existing icons in the environment, a set of icons for every need was created by a professional graphic designer. We undertook testing for these icons using ISO standardized tests before generalization.

Preliminary ResultsAn icon that was the best representation of every need was finalised through two rounds of elaborate testing. Thus, we came up with a set of icons for an ALS patient’s primary, secondary and tertiary needs. Right now, the icons are being implemented with traditional methods like charts, accordions and cards that help these patients communicate better.

Use wash-room Shower Wipe face/nose Sit up

Drink water Drink hot beverage

Have a meal Lie down

Change side to left

Change side to right

No Yes

Future PlansThe latter part of the envisaged project involves building a prototype using a VR setup. The in-built app will activate a virtual environment for the patient where his needs will be displayed as icons. This will enable the patient to choose an icon with his eyes using eye-tracking technology that will send a sound output in the house or an SMS to the caretaker.