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Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.
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Dr. Melanie Fried-Oken | www.reknewprojects.org
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MELANIE FRIED-OKEN: Hi, this is Dr. Melanie Fried-Oken. I am the director of the REKNEWal Center at the Oregon Health and Science University in Portland, Oregon, and this is your Assistance Technology Update.
WADE WINGLER: Hi, this is Wade Wingler with the INDATA Project at Easter Seals Crossroads in Indiana with your Assistive Technology Update, a weekly dose of information that keeps you up-to-date on the latest developments in the field of technology designed to assist people with disabilities and special needs.
Welcome to episode number 231 of Assistive Technology Update. This is a special episode scheduled to be released on October 30th of 2015.
Today I’m out of the office and away, and I’m going to do a full half an hour interview with a new friend of mine, Dr. Melanie Fried-Oken, who is an augmentative communication specialist who specializes in brain-computer interfaces. We have a really fascinating conversation about how do we use signals from the brain to control assistive technology, what does it look like, where is it going, and then how good is it right now.
Next week we’ll be back with our regular format, and in the meantime, we hope you’ll check out our website at www.eastersealstech.com, shoot us a note on Twitter @INDATAproject, or give us a call on our listener line at 317-721-7124.
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WADE WINGLER: You know, disability presents in a lot of ways, and we as people who work in assistive technology spend a lot of time trying to figure out how to work with folks with disabilities to get access to things like computers and communication systems and other kinds of technology. It’s all about independence. So I think I’m not the only one thinking that brain interfaces are one of the logical next steps to work with assistive technology, and because of that, I am so excited to have Dr. Melanie Fried-Oken with us. She is a speech and language pathologist. She is a professor at the Oregon Health and Science University, and directs the REKNEW Center which includes some work in brain computer interface. First of all, Dr. Fried-Oken, are you still with us?
MELANIE FRIED-OKEN: I am.
WADE WINGLER: Good. Hey, thank you so much for taking time out of your day to talk with us a little bit about this fascinating concept of a brain computer interface. As somebody who loves science fiction and technology, I’m really interested in kind of talking about a real-world application of this. But before we talk about brain computer interfaces, I would love to know a little bit more about you. How did you become interested in working with folks with disabilities and brain computer interfaces and that stuff? Tell us about your background.
MELANIE FRIED-OKEN: I am an augmentative and alternative communications specialist. I started in the field before it was even call that. In fact, I remember in 1986, going to a conference in Denver, and on the marquee of the hotel it said, welcome augmentative communication. And as you know, anybody who’s doing this can argue about it for hours and hours.
WADE WINGLER: Yeah, absolutely.
MELANIE FRIED-OKEN: So I originally started with the Rehab Engineering Center at New England Medical Center in the late 70s. I moved to Portland, Oregon, in the 80s and started setting up augmentative communication here at the University. I am both a clinical provider, so I see patients with severe speech and physical impairments and complex communication needs every week, but I also do a lot of research projects that are funded by either the National Institutes of Health or the National Institutes on Disability, Independent Living, and Rehabilitation Research. For me, the most important thing about the work we do is that all of the research projects that I lead are based on real-world challenges that we see in the clinical setting. So my patients and their families drive the work that we are doing.
WADE WINGLER: So those research projects, collectively, that’s the REKNEW center right?
MELANIE FRIED-OKEN: Correct. REKNEW stands for Reclaiming Expressive Knowledge in Elders with Communication Disabilities. So we have a number of different projects in REKNEW. We have projects related to Alzheimer’s Disease, primary progressive Aphasia, brain computer interface, ALS and Dysarthria, assistive technology and apps for people with for access. So a whole range of communication technology and interventions for people with complex communication needs.
WADE WINGLER: And that’s all fascinating stuff there. For the audience, it’s spelled REKNEW. We’ll do a link to the website here in a little bit. Dr. Fried-Oken, talk to me a little bit about the who part of brain computer interfaces. Who uses this kind of an interface, and why is there a need for it?
MELANIE FRIED-OKEN: Brain computer interface is being researched – let’s talk for a second first about the who that’s leading the field. I’d like to start by saying there really are four different interests for brain computer interface. One interest is industry, and that includes gamers and military and companies that are making the equipment. A second interest are with neuroscientists, and they are using brain computer interface to look at the brain and functions of the brain. A third group that’s interested in BCI would be engineers. Their challenge is how do we take the brain signals, how do we obtain them, how do we process them, how do we interpret them? So it’s all about signal processing. And then the fourth group are the rehab scientists, and that’s us. That’s the people who are applying this for assistive technology. So there’s many different groups interested in BCI. As far as the group that’s involved in rehabilitation, those would be individuals mostly at the current time for individuals with something called locked in syndrome. That means individuals who have severe physical and speech impairments and can’t use any of the standard methods that are available in assistive technology today. They are often paralyzed, quadriplegic, and locked into their body.
WADE WINGLER: And is it also fair to say that folks who have ALS and cerebral palsy might be in the same category?
MELANIE FRIED-OKEN: So locked in usually refers to three diagnoses, and that would be the individuals with end-stage ALS, high spinal cord injury — sometimes considered dramatic brain injury — and then folks with brain stem stroke. Classically — and classically mean the last 10 years — individuals with developmental disabilities, motor impairments, other congenital health conditions, have not been considered as applicants for BCI. The reason is the hardware and software requirements aren’t good enough to pick up a lot of signals from people who move around a lot, so individuals with cerebral palsy, those with Rett syndrome, folks with severe autism, have not yet been considered as participants for the technology. When you and I discuss the future, that’s going to be one of my soapboxes, that we need to include so many more people than just those who can’t move, because I have many clients in my practice who I would consider functionally locked in because we can’t find a good access method for them, and they are not moving.
WADE WINGLER: Yeah.
MELANIE FRIED-OKEN: But the engineering challenges are so great right now that we are not there yet with the population.
WADE WINGLER: So I’m having to make some assumptions myself about what a brain computer interface looks like, how invasive it might be, and how it works. Can you take me to school a little bit about those things?
MELANIE FRIED-OKEN: Sure. There are two kinds, two big categories, for brain computer interface. One’s called invasive, and we actually place a circuit board on top of someone’s school so that you can get good signals.
WADE WINGLER: Wow.
MELANIE FRIED-OKEN: There are systems, by the way, where they put electrodes right on someone’s brain, and that’s often during epilepsy surgery. But invasive signals are not outside of someone’s head. Those are really excellent – they function really well in terms of engineering and signals, but there’s a lot of caution for them because we need to consider infection, people have things coming out of their head, so we need to consider infection and the feasibility of functioning with this equipment on a daily basis.
What’s more popular at the current time is what’s called noninvasive systems. That’s like, consider wearing a swim cap, and attached to the swim cap are electrodes. Those electrodes read the brain signal through your hair and your scalp and your skin. That’s how those signals are acquired. So the cap is attached through different course to a computer. You have to be near a computer. It could be a laptop, but you are attached to the computer through the cap instead of just the electrodes directly to your school. So that’s the difference between invasive and noninvasive.
The work that we do is in noninvasive. Most of the work that’s being done right now is being done in noninvasive. Right now in the field, what you have to do, when you put on that swim cap, you have to have conductive gel placed between each of those electrodes and your scalp. The conductive gel is yucky. For you and me, after we have the gel put on our head, we’re okay to go home and wash our hair that night, but individuals who are locked in and dependent for their care, having that gel on their head all the time is really difficult for them. They can’t get their hair washed whenever they want often, or it itches and they can’t scratch it. So one of our challenges is, instead of using what we call wet electrodes with gel, is coming up with dry electrode systems. Again, the technology isn’t quite there.
So we have this noninvasive system that’s attached to the computer. The computer is reading your brain waves when you make a selection. There are many different brain wave that are read. For communication, which is my expertise, we are using mostly what’s called a P300 wave. So the computer is looking at your brain waves, and you’re looking at a screen. When you see what you want on the screen, a special blip comes up in the EEG, the brainwave. That blips comes up at 300 milliseconds after that picture shows, and that’s what’s called the P300. So we are averaging P300’s, and after about ten to fifteen P300’s, looking at that one stimulus, the computer says oh, that was a keystroke. That person wanted the letter H. And so that’s how the computer is reading your brain waves, looking for the P300, and taking that as a letter.
WADE WINGLER: So we’ve talked about some of the limitations related to invasiveness and the gel. Are there other major limitations kind of with the state of the art with BCI right now?
MELANIE FRIED-OKEN: There are many. In fact, we are just at the point of saying can individuals rely on this for communication? Anyone who tells you that people are using now regularly as an assistive technology aren’t actively researching the field, because we are just not there yet, Wade. In 10 years, we will be there and it will be a great option as assistive technology, but for right now, we’re still at the research stage. Individuals who use BCI are using it as a research participant. The hardware is getting better all the time, such as dry electrodes and a laptop that can run software, but we need technical support 24/7 to do this. That’s not always available. We need caregivers and providers who can learn the system, put on the cap and the cap and the electrodes and set it up. Right now that’s a pretty complicated process. But we are coming up with protocols and equipment that’s easier all the time.
There are tons of challenges in using it, including who’s the user group, what’s the best hardware, what software should be used, how do we train the caregivers, and we are slowly inching towards success. It’s pretty much like any new assistive technology. We are experimenting, we’re learning, we’re getting information, then it’ll be available. But we want to be sure that it’s safe, reliable, and consistent; and it’s not reliable and consistent yet for daily use.
WADE WINGLER: As I was thinking about this interview, some of the questions that I had were, what about privacy concerns and accuracy when we’re talking about turning thoughts into actions?
MELANIE FRIED-OKEN: So let me stop you right there, Wade, because we are not turning thoughts into actions. BCI doesn’t know your thoughts at all. All it is doing is acting as a switch, as an often binary switch. You see something in front of you and your EEG changes if you want that letter or that word or that function such as moving a robotic arm for feeding. So it is not identifying thought at all. I really want to make that clear. That’s an important point.
When we get past the idea that we’re looking at brain signals to make a selection of things that are in front of us, there, of course, are going to be ethical issues. Some of the ethical issues range from giving someone too much hope at this stage, because it’s really not available yet. Perhaps in the future, privacy will be an issue. It’s not a regular assistive technology now, so those kinds of questions are just being raised. But using it for consent or assent on things like life-saving procedures, those will become really important.
WADE WINGLER: Good. That allays some of my fears now about the state of technology and privacy concerns. That makes more sense. I guess it made more sense when you are talking about thinking about is that the object you want, and then the brain waves change so that you can do a binary kind of measurement. That makes a lot more sense.
We talked a little bit about how much of this is research and theoretical. What do the real world applications look like right now? Can you describe some of those to me?
MELANIE FRIED-OKEN: One of my favorites is called brain painting. So there are individuals who are working on a BCI and Austria who have a person with ALS look at different colors or different motions with a paintbrush and actually paint using the system. There are other individuals who are working on composing and playing music, where you see choices for what notes you want, and then your brain signal selects which note you want to add to a composition. So it can go all the way from arts, to using the machine for text generation or speaking, to using a machine or manipulation. So any application can be applied to a BCI. We just have to make sure that it’s going to be safe, reliable, and consistent.
WADE WINGLER: So safety and reliability obviously are things that are targets for future development. But tell me what’s in your crystal ball when it comes to the future of BCI. Fast-forward X many years, and I’m going to let you fill in the X. How many years on our thinking before BCI has never reached a level of development that we think is ideal or good or whatever. What is in your crystal ball when it comes to this stuff?
MELANIE FRIED-OKEN: So I’m hoping 10 to 15 years it will be an accepted, regular assistive technology that’s available. You also have to consider the whole market and putting it within an insurance or payment model. None of that has been considered at all. There’s a lot of financial considerations as well as support considerations, technical support, as well as therapists knowing what the systems are, or physicians being able to know enough about them to say let’s prescribe this; this might be interesting. So there’s many different levels that we must get to besides just the hardware and software for any kind of implementation and provider knowledge.
WADE WINGLER: Let me ask a follow-up question to that. I’ve been in the field of assistive technology for a little over 20 years, and I remember when eye gaze system felt a little bit like this, right? It’s a little experimental; it’s super expensive; the overhead of maintaining and setting up and understanding in terms of a caregiver perspective was a really high bar to hit. Is this a similar kind of situation?
MELANIE FRIED-OKEN: I think so. I think this is very similar, especially for the noninvasive systems. Individuals who rely on eye gaze for the communication, that’s going to be the group that’s going to first look at BCI as an access method. In fact, a lot of us are asking questions about what does someone’s functional vision have to be in order to use BCI. The whole process that our field went through to get eye gaze from a level from research and development to safe, reliable, consistent, within the marketplace, providers understanding the system, and people knowing how to set it up and use it, that’s exactly the same kind of system that has to go through with BCI, and we’re still at the research and development stage.
But we’ll get there. I really think it’s an important assistive technology that will get there. It’s going to get there for enhancing individuals. Imagine you’re driving, and you’re wearing a cap that has one or two electrodes in it, and all of a sudden your car says you are not attending anymore, you need to pay attention, wake up. So that could be a use of a BCI.
WADE WINGLER: I could use that.
MELANIE FRIED-OKEN: Or someone who’s had a stroke, and they are hemiplegic and they can’t use their left hand anymore, and they’re working with a BCI system that is therapeutic to help stimulate the muscles in their left arm by looking at an avatar on the screen. The avatar moves its left arm, and it’s connected to muscles that move your left arm. So that’s another use of a BCI.
WADE WINGLER: Lots of possibilities there. Tell me a story. Tell me a story about somebody’s life who has been impacted by BCI.
MELANIE FRIED-OKEN: I’m more than happy to do that. On our team — and we are in year seven of our BCI work — we include individuals with disabilities at every level of research. So they are consultants when we are asking the question, designing the process, running the experiments, and even disseminating information.
So let me introduce you to Greg. He had a brain stem stroke when he was 19. That was 20 years ago, and I was his therapist back then. When we started this work seven years ago, I called Greg and his mom and went to visit them, and I said Greg, you are the expert in locked in syndrome. Would you work on our research team? His mom started crying and said no one has called Greg an expert in 19 years. So Greg not only is part of our team and tries everything out and gives us great feedback; we argue with him a lot now about basketball teams because we’re in Portland, Oregon. We are a one sports city, we are all about the Portland Trail Blazers, and Greg isn’t. So some of the things that he counts on with assistive technology have to do with basketball teams.
WADE WINGLER: So it’s brain computer trash talk?
MELANIE FRIED-OKEN: That’s a good term. I’ll have to tell him that one. Greg also helps us present. Every three years, there is an international brain computer interface meeting. For the last few years, it’s been in the Asilomar Conference Center which is in Monterey, California. Two years ago, Greg joined us at that conference. It was the first time he had been on an airplane in 20 years, and it was also the first time that he rode shotgun. When he got to the San Jose airport, there wasn’t an accessible ramp, so his personal assistant and driver picked him up and put him in the shotgun seat, and it was the first time he had looked through a windshield since his accident. Greg came down to the meeting. He at that time was the only person with light in syndrome who was a participant at the conference. He gave a wonderful presentation on his user perspective.
WADE WINGLER: Wow. That’s fascinating. That’s really good stuff. Dr. Fried-Oken, we’ve got about a minute left in the interview. If people want to learn more about your work and brain computer interfaces, the REKNEW Center and those kinds of things, how should they reach out to you?
MELANIE FRIED-OKEN: For me, the easiest way is to go to the website. It is www.ReknewProjects.org. If people are interested, there are often presentations on brain computer interfaces at either the RESNA conferences, which I know you’ve spoken about before. So Rehab Engineering and Assistive Technology Society of North America. Next year there is an International Society for Augmentative Medication meeting being held in Toronto. There’ll be a lot of discussion about BCI as an assistive technology. And in June, the first week of June 2016, there is the BCI meeting in Monterey, California, and all that is available on the Internet.
WADE WINGLER: Dr. Melanie Fried-Oken is the director of the REKNEW Center, an expert and augmentative medication, and today has been our guest talking about brain computer interfaces. Dr. Fried-Oken, thank you so much for your time today.
MELANIE FRIED-OKEN: My pleasure. I could’ve talked for hours.
WADE WINGLER: Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? Call our listener line at 317-721-7124, shoot us a note on Twitter @INDATAProject, or check us out on Facebook. Looking for a transcript or show notes from today’s show? Head on over to www.eastersealstech.com. Assistive Technology Update is a proud member of the Accessibility Channel. Find more shows like this, plus much more, over at accessibilitychannel.com. That was your Assistance Technology Update. I’m Wade Wingler with the INDATA Project at Easter Seals Crossroads in Indiana.