240394 Perspectives of persons with ALS on the design of brain-computer interface (BCI) communication technology

Sunday, October 30, 2011

Patricia A. Wren, PhD, MPH , School of Health Sciences, Oakland University, Rochester, MI
Stefanie Blain, PhD , Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
Riley Schaff , Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
Kirsten L. Gruis, MD, MS , Department of Neurology, University of Michigan, Ann Arbor, MI
Jane E. Huggins, PhD , Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
Brain-computer interfaces (BCIs) may serve as augmentative communication systems for individuals with amyotrophic lateral sclerosis (ALS) who have lost the ability to speak and move their limbs. While BCI technology has potential value for these individuals, BCI research has emphasized issues such as algorithm development and signal processing techniques instead of BCI user needs and preferences. In this study, an in-depth qualitative focus group was conducted with 8 dyads of potential BCI users -- individuals with ALS and their caregivers. The participants were asked about their needs and preferences when considering the possibility of using BCIs as a future communication technology. Participants expressed concern about personal factors that would affect their ability to effectively use a BCI such as fatigue, comfort, setup convenience, technical expertise, and appearance. In addition, relational factors that would impact the ability of the BCI to facilitate interpersonal communication garnered considerable attention. These included issues such as flexibility of the communication interface, the ability to communicate remotely, and the simultaneous benefit and burden of the technology on relationships with family and friends. Participants were eager for research to address these concerns, expressing that a functional communication network would reduce feelings of isolation, increase independence, and improve their quality of life. Findings from this focus group can better direct practical research by aligning BCI technologies with the needs and preferences of the users and systematically integrating their opinions into the design and development of an acceptable communication technology.

Learning Areas:
Advocacy for health and health education
Chronic disease management and prevention
Communication and informatics

Learning Objectives:
1. Describe the role of brain-computer interface technology as an augmentative communication system for persons with amyotrophic lateral sclerosis (ALS). 2. List the positive factors perceived to facilitate BCI use among persons with ALS and those negative design factors stated as inhibiting adoption of this technology.

Keywords: Communication Technology, Disability

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I was an a co-investigator of this research and moderated the focus group in question.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.