One billion people worldwide live with a disability, 1 but they are often overlooked in discussions of pandemic preparedness and response. 2 3 People with physical and cognitive disabilities-including those with "invisible" disabilities that are not obvious from the outside-were at disproportionate risk of harm from covid-19 because of their pre-existing medical conditions or their social circumstances. 4 -6 People in the UK people whose disabilities affected their day-to-day function were up to three times more likely to have died from covid-19. 7 They also experienced disproportionate loss of access to medical services, education, employment, and care. 8 The number of people experiencing disability is being swelled by people with "long covid," in which symptoms persist after the acute viral infection subsides. The term "long covid" was coined by patients, initially being used on social media to describe symptoms that were impairing quality of life. 9 We argue that this experience generates an obligation to recognise long covid as a potentially disabling condition defined by clinical diagnostic criteria and supported by ongoing clinical research. Such recognition would also re-enforce the obligation of the state to extend and expand supportive infrastructure and policy for people with other disabilities. The need for just social policies grounded in contemporary theories of disability, designed by disabled people for disabled people, can also form the basis for advocacy and policy change beyond the pandemic.
Brain-Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers' experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is "good enough" for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering.
The interactive nature of this conference was embodied by 25 workshops covering topics in BCI (also called brain-machine interface) research. Workshops covered foundational topics such as hardware development and signal analysis algorithms, new and imaginative topics such as BCI for virtual reality and multi-brain BCIs, and translational topics such as clinical applications and ethical assumptions of BCI development. BCI research is expanding in the diversity of applications and populations for whom those applications are being developed. BCI applications are moving toward clinical readiness as researchers struggle with the practical considerations to make sure that BCI translational efforts will be successful. This paper summarizes each workshop, providing an overview of the topic of discussion, references for additional information, and identifying future issues for research and development that resulted from the interactions and discussion at the workshop.
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