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Pioneers of ‘brain-computer interfaces’ seek to shape the field’s future

TThree years after he was paralyzed from the chest down, Ian Burkhart is facing a problem. He received a phone call from Ohio State University asking him, as one of several patients with spinal cord injury living near Columbus, Ohio, to participate in a brain-computer interface (BCI) study .

The problem is, no one can answer his most urgent questions.

Surgeons assured him of the safety of the procedure. Researchers told him through experiments using his brain to direct electrical pulses to the living but severed muscles in his arm to activate them again.


But what Burkhart wants is a teacher companion. How could he bathe or sleep with the port coming out of his skull? What about walking to and from the lab a few days a week for the next few months, or years? And he should have felt the use of his brain?

Finally, he took the risk of participating in the 2014 clinical trial, which made him the 12th and 15th person in the world to have BCI.


Today, Burkhart is creating a group for the BCI community led by its pioneering users to discuss the kinds of questions he had seven years ago – and to serve up a wider forum to talk. to others in the BCI community. The BCI Pioneers Coalition will focus on the unique experience of Burkhart and his peers, whose numbers have nearly doubled since Burkhart received his BCI.

“Now until the mid-30s, and it’s still a great experience,” Burkhart said. “Being able to share only helps people learn.”

The field of BCI is coming to a point of change because technology research is only being developed by commercial interests. With the expected influx of patients – and money – Burkhart seeks to lead discussions into difficult, but necessary, territory in quarterly webinars, beginning in September.

Who owns the data taken from someone’s brain? What is autonomy if some version of your thoughts are read on a circuit board? Is the goal to restore mobility, augmentation, or perhaps improvement? In what ways are patients allowed to use their BCI?

“A lot of these questions aren’t black and white,” Burkhart said. “They live in a gray area and they’re so different that you have to have a lot of different perspectives to get anywhere that matters.”

The BCI Pioneers Coalition is not a traditional patient support group – Burkhart is already vice president of the North American Spinal Cord Injury Consortium and president of a foundation that financially supports patients. However, it is a grassroots effort by BCI users to focus the discussion on patient experiences, led by patients.

That doesn’t mean others aren’t welcome. The coalition will invite neural technologists, BCI company CEOs, clinicians, ethicists, the BCI-curious public, and investors to a virtual gathering space with chat and video channels. There are group-specific channels to post group-related questions, and a major gathering place for everyone to express and listen to opinions.

Jan Scheuermann, a BCI user and a founding member of the group, said part of the goal is to get different types of people to be touched by technology in one place.

By bringing together engineers and researchers with “the people on the other side, the lab mice,” as Scheuermann calls himself, “hopefully all the people who brainstorm together can be with some new ideas or insights. “

Burkhart said he hopes the gathering of BCI patients with people on the other end of the computer will attract young minds to research labs and commercial companies to develop BCIs, and encourage original researcher to pursue it after decades of trial and error.

“Not only are they working on a silicon chip, they’re working on something that can really affect someone’s life,” Burkhart said. “I’ve had people come up and say, ‘I’ve been working on this kind of research for years and I haven’t met anyone who actually uses it.'”

There are nearly 54 million people in the U.S. living with some form of paralysis, making BCI a distant reality for all but a select few. For years, Burkhart delivered devastating reality tests to paralyzed patients who saw video clips of him playing Guitar Hero. “I had to tell them… ‘Wait, it’s only a few years.’ That’s really challenging because that’s what our community has been saying for decades. ”

Now, with BCI companies hoping to expand the market for the technology, a new wave of users are expected to feel a complex set of emotions – fear, uncertainty, joy, excitement, relief and grief – experienced by pioneers in the field. The hope is that Burkhart’s coalition may be there to help them in the process.

“There’s no substitute for that,” Burkhart said, reflecting on the fellow teacher he hadn’t had yet.

Burkhart and Scheuermann formed the group with two other BCI users; each has a slightly idiosyncratic medical history. Scheuermann made news when he fed himself a chocolate bar using his BCI, which he named Hector. Burkhart was the first to use his brain to revitalize his paralyzed arm using muscular electrical stimulation.

Current BCI users Nathan Copeland and Nancy Smith are still in the lead. Copeland was the first to feel a sensation in his hand through electrical stimulation delivered directly to his brain. He was also the first to fistbump a US president. Smith was the first to play a virtual piano, using his subconscious, especially.

The experiences of the coalition founders reflect the diversity of any patient group. While Burkhart had many questions before his surgery, Copeland did not. “There are things now that I don’t think I even thought to ask at the time,” he said.

While Copeland dabbles in the unique benefits of BCIs, such as using a take-home BCI system to create digital art, he said he wants to keep the industry focused on what the potential wants. user of BCI, which may not necessarily be the most powerful technology.

Burkhart agreed. “These are the devices that go inside people,” he said. “We can make sure these devices go in the right direction, where they can be something that will be available on the market and will be successful so that more people will have access and benefit from it.”

The Food and Drug Administration does not require companies that design clinical trials to include patient advice. However, the FDA guidelines “highlight the benefits of involving patient counselors early in the medical device development process.”

Some companies may view patient input as a distraction. But if there is a group of BCI participants, companies may be more inclined to incorporate their vision and value into the design of a device, according to Kate Gelman of Precision Neuroscience and formerly of Neuralink, two new BCI companies.

Burkhart, he said, “will give patients a voice in the same play as people with all the money, which is likely to get a much bigger voice.”

Now that Burkhart’s brain is metal-free-his BCI was clarified from his brain in August last year, when the last clinical trial he participated in was over-he’s looking at the new coalition as a way to stay connected to the unique world of BCIs that has been his home for many years. “I see the promise and the potential of these types of devices,” Burkhart said.

He and his fellow BCI pioneers are the experts today, and they are here to be heard.

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