Developing brain-computer interfaces from a user-centered perspective: Assessing the needs of persons with amyotrophic lateral sclerosis, caregivers, and professionals

• We identified the needs of BCI end-users (persons with ALS and their contacts).
• BCI end-users need more information on BCIs and everyday applications.
• A BCI system should support different users through different stages of ALS.
• BCIs should monitor and account for affective states.
• Retaining the sense of agency is crucial for end-users with ALS.

By focus group methodology, we examined the opinions and requirements of persons with ALS, their caregivers, and health care assistants with regard to developing a brain-computer interface (BCI) system that fulfills the user's needs. Four overarching topics emerged from this analysis: 1) lack of information on BCI and its everyday applications; 2) importance of a customizable system that supports individuals throughout the various stages of the disease; 3) relationship between affectivity and technology use; and 4) importance of individuals retaining a sense of agency. These findings should be considered when developing new assistive technology. Moreover, the BCI community should acknowledge the need to bridge experimental results and its everyday application.