Brain Computer Interface User Preferences

As stated in the information sheet, our online survey aims to understand patient preferences and needs regarding brain computer interface (BCI) devices. A BCI is a new type of medical device that can be implanted beneath the skull, where they can record brain activity with the aim of controlling devices in the real world, such as computers, robotic prosthetic limbs, or wheelchairs. For individuals with paralysis, resulting from conditions such as motor neuron disease or stroke, a BCI may someday restore functional independence.

As devices are currently being designed and developed, it is critical stage to have patient input. Specifically, we need to understand which functions patients need most, how much training time could be tolerated, what level of performance is sufficient, and what level of risk would be acceptable.

You have been chosen as you are an individual with chronic paralysis, who may benefit from a BCI device in the future. We aim to collect 200 responses overall from individuals with chronic paralysis.

It is up to you to decide whether or not to take part. You may provide your consent by clicking on the appropriate box below. You can withdraw at any time during completion of the survey without giving a reason and without it affecting any benefits that you are entitled to.

If you decide to take part in this study, completion of the survey is estimated to take no longer than 30 minutes. As with any online survey, there are limited foreseeable discomforts or risks. The primary concern is the secure storage and management of any private data. No personal data will be stored that may be used to identify survey participants. We will not ask for your name, date of birth, ethnicity, and we will not collect your email address or IP address.

Whilst there are no immediate benefits for those people participating in the project, it is hoped that this work will inform the design of brain computer interface devices in the coming years and ensure that these devices are best aligned with the wishes and needs of patients. Please be aware that many of the device functions and risks mentioned in this survey are hypothetical, and any future clinical trials of BCI devices will provide accurate information regarding the risks of benefits before an individual would consent to join a clinical study.

If, for any reason, you wish to raise a complaint throughout the duration of this study, you should inform a member of the research team in the first instance (Jamie Brannigan, j.brannigan@ucl.ac.uk). If you were to feel that a complaint was not handled in a satisfactory manner, you may then contact the Chair of the UCL Medical Physics and Biomedical Engineering Research Ethics Committee – medphys.ethics@ucl.ac.uk.

All the information that we collect about you during the course of the research will be kept strictly confidential. No identifiable data will be collected. You will not be able to be identified in any ensuing reports or publications. Please ensure that you do not share any identifiable information in free-text response options, by ensuring that you directly answer only the question being asked.