How To Be Safer During Seizures: SafeSteps! - Daniel Goldenholz, Beth Israel Deaconess Medical Center, Massachusetts, USA
Epileptologist, Neurologist, and Researcher Daniel Goldenholz shares his innovative approach to using 3D printing technology to create practical tools for epilepsy care! He tells us about the evolution of his products - designed to assist caregivers/public during seizures. He also explains how accessible, customisable, and durable they are, and chats about the importance of community engagement and collaboration to spread awareness and provide support for those affected by an epilepsy! Transcription and links are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Daniel Goldenholz
“You'll notice when we read it, it doesn't say the word “seizure”, it doesn't say the word “epilepsy”, and it doesn't say even the word “emergency”. And the reason that it doesn't have any of those words in there is that if someone sees your keychain, you don't necessarily want to have a chat with them about it. It's not necessarily, you know “Hey, you're a weirdo.” or “You take care of a weirdo.”, like, there's no stigma that we want.”
00:25 Torie Robinson
What happens when you or someone you care about has a seizure in public? This is a nightmare for heaps of us - especially if it’s a generalised seizure where you lose full consciousness, can experience incontinence, are more likely to injure yourself, you may experience status epilepticus, and even worse….! So today - on a positive note! - we have a cool epileptologist, researcher - and secretly an engineer too, all in one! - Daniel Goldenholz - who has invented these cool products that are little, they’re informative, subtle (unless you desire the opposite) and potentially life-saving! And, they can be printed locally!!
If you haven’t done so already, please do like and comment on this episode, and subscribe to our channel, so that we can get lots more people around the world learning facts about the epilepsies!
01:11 Daniel Goldenholz
So, my name is Daniel Goldenholtz. I am an epileptologist at Harvard Beth Israel Deaconess Medical Center. One-quarter of my time I see patients and work in the hospital as a clinician with EEG and epilepsy-neurology patients. And three-quarters of my time I do epilepsy research. I run the Epilepsy Plus Data Science Lab and we study machine learning, AI, advanced simulations, and now we've gotten into 3D printing.
01:38 Torie Robinson
So, tell us about your new 3D printing and why do you like it? How do you get started?
01:42 Daniel Goldenholz
During the pandemic, I started a hobby of playing with 3D printing and I started thinking immediately “Well, since this tool is neat, maybe I could do something for patients with epilepsy.”. And at first, I didn't quite know how. And then I started coming up with some prototypes of maybe some sort of a thing that you could give caregivers of patients with epilepsy. And over time, that thing started out as a sign, and then it became a little box, and then it became some sort of container, and then finally it became a little keychain thing. And then once it became a keychain thing then it became also like a little NFC tag that you can tap your phone to and it became a QR code that you can snap a photo of. So I have three different designs I'm working on… a few others, but the basic idea is the same: if a person who takes care of someone with epilepsy sees a seizure in front of their face what should they do?
02:35 Torie Robinson
For whom is it applicable?
02:37 Daniel Goldenholz
Typically for a convulsive episode. And the reason for that is that those are the ones that are most likely to cause a major injury and sometimes can lead to status epilepticus, which is a medical emergency and requires immediate hospitalisation.
02:53 Torie Robinson
Does it look cool? Like, what does it look like? Have you got any?
02:56 Daniel Goldenholz
Let me show you. So, I have…
02:56 Torie Robinson
Ok…
02:57 Daniel Goldenholz
…a very funny prop……I have here… let's see if I can show you my funny prop. So, this is..
03:00 Torie Robinson
Oh, oh gosh, haha, that’s massive!
03:00 Daniel Goldenholz
…the giant version of it. And the giant version is just for show. This is not a real useful thing.
03:09 Torie Robinson
So we have:
“Lay down on one side” - so this is like a square shape isn't it.
“Five minutes call 911” - or we can change that to 999 or whatever.
“Nothing in mouth”, and;
“Protect the head”
03:21 Daniel Goldenholz
So these are the 4 messages that are distilled down from the Epilepsy Foundation's handout, which, sure, we can give a piece of paper to people in clinic, but that paper gets put in a shelf somewhere and it's not there when a person is having a seizure. The idea is to have something with you. So, that's the big thing that's easy to read. This is the keychain on my actual keys…
03:42 Torie Robinson
Oh, cool.
03:43 Daniel Goldenholz
…and I've been wearing this thing for many months, and the reason that I do that is to make sure that it doesn't break, so I know that it's strong and sturdy, and also the text can't rub off because of the way it's 3D printed. Even if you scratch it down, the text is completely flush with the surface of the keychain as well.
03:59 Torie Robinson
And how big are they?
04:00 Daniel Goldenholz
They can be different sizes. You can make them gigantic like my silly one. You can make them the standard size like this. This is, I don't know, just about…
04:09 Torie Robinson
5-6 centimetres?
04:10 Daniel Goldenholz
…yeah, this is about 80, I think, millimetres. So not super big. So, you can see that it's a tiny bit bigger than my key, which means that it would fit on a standard key chain and it's very narrow, so it won't get in the way of things. It's not going to bulk up your purse or your pocket or what have you. But you'll notice, when we read it, it doesn't say the word “seizure”, it doesn't say the word “epilepsy”, and it doesn't say even the word “emergency”. And the reason that it doesn't have any of those words in there is that if someone sees your keychain, you don't necessarily want to have a chat with them about it. It's not necessarily, you know “Hey, you're a weirdo.” or “You take care of a weirdo.”, like, there's no stigma that we want here. We just want to help somebody. And, you know, I'm very aware; some patients don't want people to know that they have epilepsy, some people don't want to wear a special alert bracelet, and some people just don't want to be identified. And so I think that's important to keep in mind. I printed this in purple and white, but there's nothing special about these colours other than, you know, some people think that purple is the colour of epilepsy. You can print it in any colour you want, any combination, or you can make this a rainbow and then make these black letters or whatever you like.
05:25 Torie Robinson
So you can have a pride one… you could have your favourite…I'd want it red, probably, or blue. And all of that is possible because it's done through code, right?
05:53 Daniel Goldenholz
It’s not specified, actually. So, you choose.
05:36 Torie Robinson
Yes, okay. And so, you need a 3D printing machine for this, right? How does that work?
05:41 Daniel Goldenholz
You need a 3D printing machine. So, these days you can go online and buy one. During the pandemic, I went and bought one on sale for like, I don't know, 150 bucks (and that’s US dollars). I played with it for a long time and learned all kinds of things. And then eventually, as part of the lab effort, because I realised there's some practical applications, we got some fancier printers and now we have a very, very fancy printer.
06:04 Torie Robinson
Mmm!
06:05 Daniel Goldenholz
But for very, very inexpensive, you can get into the hobby. In order to print this thing, you need to have the capability of printing 2 different colours in the same model and that requires one step above the basic printers. These days, you can spend $400 US dollars or more and get that capability.
06:22 Torie Robinson
Okay, some fancy thing.
06:22 Daniel Goldenholz
So, it's still, it is affordable to many, but not everybody.
06:27 Torie Robinson
So, I was actually, I've already been speaking to people about this and I was talking to a fabulous chap in Kenya the other day and said “Do you have access to one of these machines?” And he's like, “My mate's got one. Okay, let me go and see if I could use that.”. So, that's another potential for people, right?
06:39 Daniel Goldenholz
Yeah. And so, the idea here is that we put the plans for the keychain online. It's free to download the plans. If you have a printer and you have the plastic filament (which is very, very cheap), then you can print it out today. And you can print out as many as you want. If you have a lot of filament you can print a lot. It takes time to print them, but if you have the time and the patience and the printer, then go for it. You can do it now. The other problem is - that you mentioned - that 911 is not for all countries. So, we changed it so that there's a different version for all the English speaking countries with the correct number on it. And today I just released - experimentally - 20 different languages as well! So, we've got French, we've got German, we've got Urdu, we've got… there's a long list.
07:28 Torie Robinson
Amazing.
07:28 Daniel Goldenholz
And it covers something like 6.6 billion people (according to AI) in terms of who can now read these things. It's experimental because I don't speak all those languages and I can't say that ”This is the correct, culturally-appropriate phrase.”...
07:43 Torie Robinson
Okay.
07:43 Daniel Goldenholz
…but I would love for people who do speak those languages to go and check it out and tell me what's right and what's wrong. Because we now have it set up that it's very easy to change the text to the most appropriate thing. And once it's verified from clinicians in the language of interest, we can put that mark down as verified.
08:02 Torie Robinson
Amazing. And I also had another thought about this keyring: So, something that annoys me about keyrings, especially - I’m generalising, but [with] free ones, is that they will come with a hole in it, and then it has a the metal hoop, and then that metal hoop attaches to your whatever. But I don't think that's how this works, right?
08:22 Daniel Goldenholz
This just has a hole in it - and so I'm going to take my big prop to make it easy - so it has a hole, and you put whatever you want in it. It's thin enough up here that a standard keyring for keys can be bent open to get it in there…
08:36 Torie Robinson
Yeah.
08:36 Daniel Goldenholz
… but no, I'm not attaching a piece of metal to this at all, because actually 3D printers that print metal are super-duper expensive, and that's not practical. So, there's no metal involved in this thing. I should show you also the QR code version; looks like this. It's very small and cute and it has a little loop also for the keyring. This is the NFC one. And so this one I put up to my phone and I hold it and then - I don't know if you heard it but it just beeped - and that beep will take me to a website which says the 4 phrases that we just discussed and it knows what country I'm in so it'll say the correct country code for the for the 911. And it's the same website from the QR code version.
09:19 Torie Robinson
Could we not use… get a QR code of our own and combine that with the code required for your keyring?
09:24 Daniel Goldenholz
That sounds like an excellent addition. And I had a great conversation with a colleague who said that it would be good to have a unique domain name for this project, SafeSteps. It's emergencysafesteps.com. And if we have that, then we could do exactly what you said, which is not only give you the quick emergency thing, but also maybe some customised stuff that would be unique to you.
09:47 Torie Robinson
When we first spoke about this, you were saying how you're really open to individualisation for things like this and, you know, how people can use different colours if they want…
09:57 Daniel Goldenholz
I originally was printing the key chain in black and white because that's maximum contrast. It's the easiest to read, but I was quickly told “No, no, no, no, don't you know that purple is the colour of epilepsy?” so I was like “Okay, fine.”(!), and I printed in purple and I went to a particular patient who said “Well, my wife would want it in red.” and you know, whatever, and then I realised this is going to be whatever people want! So, I'm going to print purple ones because, you know, it's recognisable to people in the epilepsy community as epilepsy-related, however, the plans don't specify the colour. You choose what colours you like. As I said, you can make multiple colours throughout your print however you want. The key point is that it should be readable.
10:37 Torie Robinson
Is there… I'm just thinking of people who are very sensitive to touch. I'm not overly sensitive, but I hate a certain slimy, soft feeling. Is it possible to have the touch we like?
10:50 Daniel Goldenholz
That's an interesting thing, So, I actually call this model is the “SafeSteps-T” for “tactile”. If you can see very subtly that the letters do actually raise a little bit above the flat surface.
11:04 Torie Robinson
Uh-huh.
11:04 Daniel Goldenholz
And I'm a little bit one of these weird people that really like certain surfaces and really don't like others,
11:12 Torie Robinson
Same!
11:12 Daniel Goldenholz
.. so, I know what you're talking about. And in my pocket, I sometimes might just feel this thing and it feels nice on the…for me, it's because it's not smooth and slimy. It's got little bumps and stuff like that, so you can… it's not like reading braille but you can kind of feel the letters as you go along - and maybe that's interesting for the person that likes to fidget a little bit. But if that's the opposite - if you hate that - then maybe you don't want the tactile version. There is a version of this that prints one of the surfaces completely flush with the body of the print so that it's completely flat and maybe that's more comfortable for you.
11:46 Torie Robinson
Ahhh.
11:46 Daniel Goldenholz
And you can easily modify the code so that it would make all four sides flat and flush. And obviously, this one has no bumpy surfaces at all. It's all smooth, including the front surface. And this one is, I don't know, [it] depends on your printer how smooth it'll be, but it's smooth-ish So, the answer is yes, but it might require a little bit of work.
12:08 Torie Robinson
And I was just thinking of asking you, how long do you reckon they last? But I expect that could be defined by how much you play with it and how much you throw it around…
12:17 Daniel Goldenholz
These are supposed to last a long time. So, plastic, as you know, is going to outlast us for thousands of years, which is scary. This particular type of plastic is called PETG. It is a recyclable type of plastic - so, it's not supposed to last for millions of years. It's supposed to be recycled when you're finished with it. But it does have the property that stays in its shape for a long time. And this particular plastic is heat stable So, if you put it in your car and you leave the window closed and it's a very hot day, it doesn't melt. And as I said, if you scratch down the text, it doesn't get destroyed. Unlike things that just have, like, something kind of written on it, this is actually embossed into it, if you will. And so it's a little bit of a different way. I've been carrying these keys around since September, so I don't think that they get damaged in any significant way. I think that they're pretty robust.
13:10 Torie Robinson
And if any companies or organisations are interested in using this or creating them for people, because… what do you think about that idea?
13:20 Daniel Goldenholz
I very much want that. I want everybody that that knows anybody with epilepsy to give a copy of one of these things to the person that takes care of that person. And how can they do that? So, like you said, if you know somebody who's got a 3D printer right now, they can go and print it. They don't need my permission, there's you know, the license on there says basically like if you change it, just mention me. That's it. So, you can use it commercially, you can use it for research, you can use it for fun. So, print them out. If we're talking about an organisation and a lot of people, then it might actually make sense to take the 3D designs and give it to a professional injection moulding company that will print them out for super-cheap per unit, and they'll print out 10,000 of them. And I'm very open to partnering with any organisation that wants to do that to help make that happen quickly. There's no money in this for me. I don't get anything out of this other than knowing that we're trying to help people. So, yes. Please!
14:23 Torie Robinson
Thank you to Daniel for telling us about his cool, new, simple invention which can help people who experience generalised seizures!! Check out more about Daniel at the website t-o-r-i-e robinson.com where you can access this podcast, the video, the transcription and of course, Daniel’s cool SafeSteps website where you can download code for free to create the products!!
And if you’re new and you haven’t done so already, please do like and comment on the episode, and subscribe to our channel so that we can get lots more people, around the world, learning facts about the epilepsies! And see you next week!
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Daniel Goldenholz is an Assistant Professor at Beth Israel Deaconess Medical Center and PI of the Epilepsy & Data Science Lab.
Daniel’s mission is to find ways to improve the lives of people with an epilepsy through technological (engineering, data science and statistics) research, collaboration, and patient care.
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LinkedIn Daniel Goldenholz
Website Daniel Goldenholz
SafeSteps SafeSteps Platform
ResearchGate Daniel-Goldenholz