Advocacy for Accessibility Technology (S1:E25)
July 21, 2022
We are joined by a passionate advocate for equity of access to information, Kim Charlson, the first female president of the American Council of the Blind and the executive director of the Perkins Library, a division of the international NGO Perkins School for the Blind. Kim, who is completely blind herself, is shifting the paradigm, proving that people with disabilities can lead the accessibility charge, specifically in the medical technology space.
Speaker 1 (00:01):
You're listening to Humans in Tech. Our podcast explores today's most transformative technology and the trends of tomorrow. Bringing together the brightest minds in and outside of our industry, we unpack what's new in physical access, identity verification, cybersecurity and IOT ecosystems. We reach beyond the physical world, discuss our digital transformation as a species, and dive into the emerging phygital experience. Join us on our journey as we discover just how connected the future will be, and how we will fit into that picture. Your host is Leigh Dow, VP of Global Marketing at Identiv.
Leigh Dow (00:43):
Welcome. I'm honored to be joined by our guest today, Kim Charlson. Kim was the first female president of the American Council of the Blind, and is the executive director of the Perkins Library, a division of the international NGO Perkins School for the Blind. As a globally recognized advocate for equal access for people with disabilities, kim was a driving force on the passage of the Marrakesh Treaty in 2013, which facilitated access to published works for persons who are blind, visually impaired or otherwise print disabled.
She also serves as a member of the Braille Authority of North America, the standard setting body for braille in the United States and Canada. She's a distinguished expert on library and information services for people with disabilities, and Kim serves on several committees for the library of Congress' National Library Service for the Blind and Physically Handicapped, and has contributed to numerous publications on braille and library services.
In 2019, the Association of Specialized Government and Cooperative Library Agencies awarded Kim the Francis Joseph Campbell Award in recognition of her leadership and commitment to inclusion and empowerment. Kim, I thank you so much for taking the time today to join us.
Kim Charlson (01:56):
Well, thank you. It's a pleasure to be here.
Leigh Dow (01:59):
Your reputation definitely proceeds you, but is there anything that we didn't cover in the intro you'd like to share about your background with our audience? Maybe just a little bit about how you got into this space?
Kim Charlson (02:10):
Well, I certainly am a passionate advocate for information access and equity of access to information. And part of that is my own background in history, being someone who is totally blind myself, access to information has always been a driving force in my life, but what I do and the career path I chose as a director of a library program for people with disabilities was primarily because there were no people with disabilities leading the charge in the field of library and information access. And so I thought it was about time that we kind of changed the paradigm a little bit, and that people with disabilities were guiding a library service and making it more accessible and really doing the kinds of things that people who have disabilities need in their library and information access and technology requirements. So it's been a journey that is absolutely rewarding to me, helping others navigate all the different technologies and access to information.
Leigh Dow (03:23):
That's so interesting. I never would've actually thought about that. That there would be no people with disabilities leading the accessibility charge and being the advocates there. I would've never thought that would be the case.
Kim Charlson (03:39):
Yeah. There are a lot of people working in this space, which is great. The paradigm has shifted and there's much more of a conscious effort about nothing about us without us as the mantra of the disability community, let us be part of the equation, let us be part of the solution. And so that's really an exciting part of watching the whole accessibility field grow over the last 20 to 30 years and seeing how that shift has happened.
Leigh Dow (04:11):
I actually went to a Billboard business event, a Billboard music business event, and they had an organization there that was talking about making festivals and concerts more accessible. And I just thought that conversation was really fascinating about how the artist sees someone who's doing sign language or other aspects of accessibility as a personal extension of themselves. And it was just a really fascinating conversation. And so now that we are talking about the health space and pharmacy space, what has your experience been in regards to accessibility to digital health?
Kim Charlson (04:53):
So especially in the last two years, the whole access to medical information has changed so dramatically. With telemed access, and sometimes that's the only way that you could get healthcare advice and guidance. So the importance of accessibility to the internet has become just critical to just having access to basic healthcare services. And ordering medications online is another area, making sure websites are accessible and designed so that they meet the WCAG guidelines for accessibility. That's probably the number one area, but there's so many other areas in the healthcare field that people may have experienced. Going into a clinic and walking up to a counter and finding a kiosk where you sign in to verify that you're there and you're ready for your appointment. Those kiosks are seldom accessible to someone who is blind or has low vision.
There's a lot of different devices now on the market for home based or outpatient or diagnostic equipment purposes that people take home and do home based use of those equipment items, such as glucometers, glucose monitors, insulin pumps, blood pressure readers, at home chemotherapy treatments, oximeters, peak flow meters, just to name a few. That if those devices could be designed at the get go with either speech output or some kind of tactile markings or audible tones built in, they would become so much more accessible than they are in many cases today.
Leigh Dow (07:01):
So at Identiv we're really on a mission to make healthcare more accessible with a much greater level of privacy, safety, and independence for blind and visually impaired customers via our Nearfield Communication Technology. What has your experience been with NFC in particular?
Kim Charlson (07:19):
Well, it started probably about eight or 10 years ago with the whole idea of trying to deal with the issue that many people who are blind or visually impaired have with identifying their medication. The average person these days I think might take two or three different medications, and if you have various conditions it could be even more. If you have low vision or no functional vision at all, all of those bottles kind of feel the same. They're roughly the same size. Occasionally you might get one's a round tablet and the other one's a capsule, but sometimes you can get medications that look the same, the bottles are the same, and it's very challenging to identify them. So there's lots of strategies out there that have been used for decades in the blind community. People would put a rubber band on one and not on another, or they might use a sharp tool to scratch a letter on the cap of a bottle that somebody could feel the print letters scratched into the top of the lid.
But if you take multiple medications, trying to remember the one on the left is this one and the one on the right, or if they get knocked over and you mix them up, there was just a lot of chance involved in whether or not somebody was going to be taking the right medication. And it actually can be dangerous. People have inadvertently taken the incorrect medication and taken too much of it and ended up in the hospital. Or in one just horrifying case, thank goodness it didn't end up being tragic, but a blind mom had inadvertently gave her child her father's medication.
Leigh Dow (07:19):
Kim Charlson (09:15):
And thought it was the child's medication, and was totally horrified because she worked so hard to manage where the bottles were and how they were organized and how they were marked. And one of her kids moved them around. Not intentionally to be spiteful-
Leigh Dow (09:32):
No, just because they're kids.
Kim Charlson (09:33):
Wiping the counter off and rearrange the bottles. And so using strategies like that bring risk into the equation. And that is when things happen that we don't want to happen. So the first efforts to develop some kind of an identification system that would use scanning and NFC, or an RFID chip, was for a product called ScripTalk, which is a talking scanner that voices the information programmed into the label so that a blind person can know what the medication bottle is, what's inside it and what the instructions are for using that particular medication. So it was a real breakthrough because most blind people are not necessarily born blind and they also may not know how to read braille. And so they lose their sight later in life. And vision loss is also a complication of aging. So you get a higher percentage of elders who can't see well, and they also are on a higher level of medication for a variety of age related issues. And so we often would encounter the medication problem.
And we found that families were so worried about whether their family member could care for themselves and take their own medication correctly, that they often would be placed in assisted living or nursing home settings, just because they couldn't manage their medication correctly. So having this kind of technology has really made a breakthrough in allowing people to be independent and to age in place, which is hugely important.
Leigh Dow (11:26):
Yes, definitely. Well, as you know, we've worked with CVS health to develop an in-house prescription label technology that makes the medicinal labels accessible to the blind and low vision community. And that talking prescription feature is the first in-app prescription reader developed by a national retail pharmacy. I was thinking maybe you could share with us how Spoken RX works.
Kim Charlson (11:50):
I'd be delighted to. I've worked on this project for several years, and the impetus where it started, there have been mail order pharmacies around the country that have used NFC technology to label prescription medications. And they could do it fairly easily because they were mail order based, they had the equipment in their facilities to fill the prescriptions and then send them out directly to a person's home. And they could do that with braille. They could do that with the speech NFC technology, as well as a large print label, for example. And that was great.
The reason that Spoken RX, which is the CVS app that allows us to scan a pharmacy, a medication bottle came to being was because the mail order pharmacies only worked for mail order. So if you had an infection in your finger and you needed an antibiotic that day, there wasn't really a real good way to get a product from the pharmacy when you dropped in at CVS and said, " need this refilled now." They could fill it for you, that would be great, and you could take it home, but it wouldn't have any kind of label. It wouldn't have any instructions once you left the store, if the pharmacist shared it with you. And so you had the bottle with no label.
So we had the answer for the mail order shipment, but we didn't have the answer of how to make the prescription accessible the same day when you go in and want to pick it up because you just got prescribed a new medication. So what Spoken RX does, and what I also think is pretty terrific, is that it places the app for using your iPhone or your smartphone, because it could do Android as well, on the smartphone, and you can use it and scan the barcode label.
So as long as you have the app and it's set up and you're registered with the pharmacy as needing to have Spoken RX on your pharmacy bottles, then the pharmacist can do that. And so I'm happy to show you how it works, because it really is groundbreaking. The fact that the pharmacy, that CVS Health actually decided to put the-
[inaudible 00:14:31] to catch your images and access...
Kim Charlson (14:32):
Okay, you're going to hear my iPhone talking, and I'll do a little bit of a demo. But the fact that they put the Spoken RX feature right in the CVS pharmacy app is really terrific because it makes it part of a mainstream app with a mainstream company that believes that this is important enough, they want to put it in their app that everybody uses. And that helps to promote it, it helps to broaden the awareness of the product and make others know that this product exists, that there is a way to scan a label and get the information on your prescription. So having it right in the app is really, really good because that just makes more people aware that it exists. And maybe they have a family member who can benefit from this. When they were in the app, just looking at coupons or refilling a prescription order themselves, and then they saw Spoken RX. So it's great. So I will use my iPhone and hopefully we'll get a good quality example of what it sounds like. Okay. Open CVS pharmacy.
Kim Charlson (15:50):
Okay. So now we're going to look for Spoken RX.
[inaudible 00:15:52] pharmacy, prefilled prescription schedule, all prescription, view recent, transfer a, simple dose, prescription, prescription, [inaudible 00:16:00], pharmacy set, view family... Automatic refills, messaging and alert, more settings, pharmacy tools, identify, drug, Spoken RX. Link.
Kim Charlson (16:09):
There we go. Spoken RX. Tap on that.
[inaudible 00:16:13]. Heading.
Kim Charlson (16:14):
It's going to tell us what it is.
This service sets RFID tags to your prescription bottles. That way you can use your cell phone to scan the tags and have prescription information read aloud. Go to scanner button.
Kim Charlson (16:24):
Okay. So then I'm going to go to the scanner option. [inaudible 00:16:28] my bottle.
Ready to scan. Ready to scan.
Kim Charlson (16:28):
All right. I got a bottle here.
Ready to scan. Hold your device near your prescriptions package. Prescription information, heading, patient name, Kim Charlson, prescription, vitamin D3, 5,000 unit tablet. Dosage, tablet. Directions, take two tablets by mouth once daily. Prescription number 21. Discard after July 1st, 2021.
Kim Charlson (16:53):
Yeah, this is an old bottle. So we're safe.
[inaudible 00:16:56]. Pharmacy address.
Kim Charlson (16:58):
And it tells me where I filled it.
Pharmacy phone number, get more details. Button. Scan again.
Leigh Dow (17:04):
That's really cool.
Kim Charlson (17:07):
So it tells me all the things I need to know about my prescription. The sticker is on the bottom of the bottle. So the first time I did it, when it failed, I was pointing at the lid. I forgot to turn the bottle over. So when I did it the second time it worked. So the app is great because it's on your phone all the time. It's there with you. When you travel, you don't have to take something special. But the technology, the NFC technology and the sticker can also be used. A lot of people in the blindness community who are older are not really great with the new iOS technologies or smartphones and tapping and flicking. That's not something they grew up doing. So they're not as comfortable with some of the new technologies that are out there. So CVS also invested in a standalone speaker that can read the tag on the prescription bottle, and I have that here, and I'm going to show you how that works. It's kind of an oval shaped flat speaker with a thumb wheel on off button on the front. And we turn it on with that.
Spoken RX, ready.
Kim Charlson (18:30):
Okay. So the device is ready. And if I take my prescription bottle and set it down on the device, I can push a button and it will read to me and scan it.
Patient, Kim Charlson, medication vitamin D3, 5,000 unit tablet. Instructions, take two tablets by mouth once daily.
Kim Charlson (18:57):
And I can use the arrow to review different parts.
Instructions, take two tablets by... Instructions, take two tablets by mouth-
Kim Charlson (19:05):
[inaudible 00:19:05] if I go back.
Medication, vitamin D3, 5... patient, Kim... Patient-
Kim Charlson (19:12):
Those are the three things the speaker will tell me, is who it's for, what it is, and how to use it, effectively. So that's a very, very simple device that somebody with no technology skills whatsoever can operate. It works really easily for them. So that way, this wonderful technology that gives more independence for accessing your medications can be available to somebody who doesn't have internet access, or isn't comfortable with the technology.
Leigh Dow (19:44):
Very nice. With all of the work that you've done in your career, can you educate us on how can we be better advocates for digital health accessibility for blind and low vision people?
Kim Charlson (20:03):
Thinking about just how would a blind person use this product is a question that designers should be thinking about when they're starting to create a new app, a new website application, or device, medical devices and equipment. Some of the devices that I mentioned earlier, like a peak flow meter, very simple technology, not very affordable. I mean, it is affordable. It's not expensive. And yet somebody with asthma who's blind can't measure their own peak flow. We're fortunate, there are now blood pressure monitoring systems on the market people could have in their home that do talk and are pretty accurate, but it hasn't been all that long that there's been accessible ways to measure blood sugar for diabetics. And diabetes is one of the leading causes of blindness in the country. And yet people were still having to prick their finger and use a talking measuring system that required doing that multiple times a day.
I'm glad to see that several manufacturers now have created an app and have a sensor that can basically go on your arm and stay there for up to two weeks. And that allows someone with diabetes to check their blood sugar anytime they want, and they don't have to prick their finger every time they do it. I have known people who were on chemotherapy, but had to go to the clinic because the home based chemotherapy medication delivery system wasn't accessible. So they couldn't monitor their own treatment and they had to go into the clinic to get treatments instead, when everyone else was doing them from home, which then makes their healthcare more expensive, which isn't fair to them at all.
Leigh Dow (22:06):
Right. It definitely sounds like there's been some really great strides made and many more that still need to be made.
Kim Charlson (22:13):
I think that there is a lot more awareness about thinking how different populations could and needs to have access to equipment. And there's been quite a bit of awareness about the physical aspects of medical equipment, mammography equipment. How would somebody in a wheelchair be able to do a mammogram? There's just ways that sometimes you can't figure them out. You have to either have a table, they can lay on a table. It can be done differently. There's different approaches to doing things based on people's needs and abilities.
One thing that is being worked on now to address this issue is some potential legislation in Congress, H.R.4853, which is a bipartisan bill called The Medical Device Non-visual Accessibility Act. And it requires development of some standards for accessibility, for medical equipment and devices, and then the implementation of those standards into regulations and guidelines that industry can use to make their equipment more accessible. So that's a really important step that's being taken now with Congress, looking at legislation to address this problem.
Leigh Dow (23:39):
Well, thank you so much for taking the time to join us today Kim, I think that you're just making the world a much better place with your advocacy and all the work that you've done over the years. It was just really an honor to speak with you.
Kim Charlson (23:54):
Well, thank you so much. And if there's any follow up questions, I'm happy to send out to provide my email address here, if that's okay. And if people want to contact me, they'll be able to do that. It's Kim Charlson. It's email@example.com.
Leigh Dow (24:18):
Perfect. Thank you, Kim.
Kim Charlson (24:19):
Speaker 1 (24:21):
Smart, simple, single use technology can put valuable time back in the hands of healthcare workers and around the world. Identiv's capacitive fill level sensing tags are the first passive NFC enabled sensing solution to monitor fill levels. Simply attach the tag to any cartridge, bottle or a liquid filled container to sense the fill level, no external sensors or special equipment required. The tags can also sense if syringes or autoinjectors have been properly administered, empowering clinical trials, patient compliance and telemedicine applications. Learn more at identiv.com.
Physical security, identity verification. The IoT, the hyper connectivity of our lives will only grow more pervasive as technology becomes more automated, and experience is more augmented, it's up to us to preserve our humanity and use new tools and trends for good. The only question is, are we up for the challenge?