Brain-computer interfaces for communication in severe acquired brain damage: Challenges and strategies in clinical research and development

Abstract

Brain-computer interfaces mediate interaction and communication via technology without relying on visible behavior. Thereby, they promise to benefit patients with neurological diseases that destroy motor functions. In particular, brain-computer interfaces may promote insight into mental states and cognitive functions in severe acquired brain damage, for example in disorders of consciousness (DOC), like the unresponsive wakefulness syndrome (UWS) and the minimally conscious state (MCS). The clinical research and development for brain-computer interfaces reveals multiple challenges, which are examined by methods of social science research. Strategies to cope with and to resolve obstacles are derived from contributions by caregivers, academic experts, and researchers. Challenges and strategies are identified and analyzed regarding the lack of validity in case of false results, the choice of communication topics, informed consent, well-being and avoidance of harm, transparency regarding restricted research resources, prevention of false hopes and beliefs, and data protection. Negative results concerning communication skills in the patient population with severe acquired brain damage are not valid for prognosis because of individual variants and the novel condition of the technology. Reasonable communication begins with exchanges about topics of everyday life and care. Informed consent, depending on legally authorized representatives, is legitimate in view of the potential benefit for the individual patient. Attention to the patients’ levels of comfort during human-technology interaction fosters their quality of life. Regarding the research and development process, limited resources are to be made transparent, exaggerated expectations should be prevented, and data protection rules need to be followed.