Hazel Tang A science writer with data background and an interest in the current affair, culture, and arts; a no-med from an (almost) all-med family. Follow on Twitter.
A robotic arm could change every aspect of a disabled person’s life, clinicians must advocate the fantastic potential of robotics for their patients with disabilities and complex health conditions.
Robotic technology powered by AI could give patients with severe disabilities a chance to live fuller, more independent lives – a robotic arm or leg could drastically improve quality of life.
But the possibilities of mechanical prosthetics will be squandered if healthcare providers fail to pay closer attention to what their patient’s need.
This warning comes from Adriana Mallozzi, a pioneer and innovator who builds assistive technology (AT) for people with limited to no use of their limbs.
Adriana Mallozzi, CEO of Puffin Innovations
Adriana became a lifelong AT fanatic, innovator and user after being diagnosed with cerebral palsy as an infant.
When she was a child she used AT developed by Words Plus, a company which had designed a hardware synthesizer for the late Stephen Hawking, and other tools (including Morse Code, which she learnt at eight-years-old) because she was determined to do more in spite of her paralysis.
But several years ago, in her mid-thirties, she had a robotic arm attached to her wheelchair for just three and a half days as a demo, and she told AIMed Magazine it changed every aspect of her life.
“It was the most amazing thing for me,” she said, “I was able to give myself a drink for the first time, in my mid-thirties. I was able to feed myself for the first time.”
“Just simple little things that I could do – walking my dog while holding the leash, pushing an elevator button, going to get a Starbucks – they were huge for me. I felt normal.”
“My significant other was bragging to everyone on the phone about how much I was able to do with my robotic arm.”
“It felt…it was just an amazing feeling, and I think it was really obvious I was extremely happy. All of my friends who saw me during that time could tell I was just beaming.”
The robotic arm, called JACO, was provided by a company called Kinova for just three and a half days and Adriana was not able to keep it. The cost of the robotic arm was $50 thousand dollars to buy out of pocket and $80 thousand dollars to get it on insurance
“When they took the arm off my chair, I truly felt like I had lost a body part. I felt a sense of loss. I had a new-found respect for people who have lost a limb,” Adriana said.
But Adriana kept her strengthened belief that AT like her robotic arm will radically improve the quality of life for people with paralysis of any kind.
“Our goal in this world is to lead more integrated and independent lives,” Adriana said. “People take little things for granted, like changing the channel on your TV, but for me they would change pretty much every aspect of my life.”
This should be an exciting prospect for all healthcare innovators: solving some very simple problems could lead to drastically better outcomes for the nearly 5.4 million people with paralysis across the United States alone [1].
Adriana said a robotic arm changed every aspect of her life
However, the chasm of understanding between providers and the patients they serve threatens to thwart the best efforts of those on both sides to deliver useful tech like a robotic arm.
Adriana says it is common for devices which are built for people with disabilities to not fit their needs.
“Always the user has to adjust for the technology, whereas it should be the other way around,” she said. Her company, Puffin Innovations, is trying to reverse this paradigm by building devices which use AI to adapt and fit the patients’ needs.
But, as she tells audiences of occupational therapists (OTs) and physicians when she gives talks on patient engagement, often patients get a bad deal because their doctor isn’t giving them enough opportunities to try technology that will work for them.
A shocking and highly revealing story she often shares is based around her time working in a Dayhab center, a facility for individuals with developmental disabilities.
“They had me facilitate wheelchair appointments because I use one and I am knowledgeable in that aspect of things,” Adriana remembers.
“A client in his late-twenties that I knew had a wheelchair appointment in another department and when he came out I asked him about what kind of chair he was getting.”
“He told me he was keeping the same chair, but this chair he had was awful for him. He didn’t sit right in it, he could not use it very well and he was miserable in it.”
“I asked him whether he’d tried out other chairs, and he said no, so I called his parents, I spoke to his mother and I asked why he didn’t try out other chairs. His mother said she didn’t know he could try other chairs.”
“Getting a wheelchair is like buying a car, you have to test drive other chairs, I told her, but she said nobody had told her son that.”
It just so happened that Adriana knew the OT who had taken the wheelchair appointment with this patient personally, and professionally, because they had worked with her at one point.
Adriana gave her a call and asked her to explain why this patient had not tried any other chairs.
“She basically said that because of his cognitive level, she did not think there was any point in letting him try other chairs.”
“I almost flipped,” Adriana said, “I wanted to reach through the phone and strangle this woman.”
She demanded they set up a time for the patient to come in and try another chair. Adriana took time off of work to go to the appointment with the patient and his parents because she had a specific chair in mind for him which she wanted to ensure that he tried.
“He got in that chair, he drove like he had never driven before,” Adriana recalled, “His mother was in tears. It was just amazing, I was so happy.”
“Once he got a better chair, his demeanour changed. Everything about him changed because of this chair which showed the first chair he had wasn’t right for him.”
After witnessing the transformative effect of this treatment, the OT who had decided not to let this patient try other chairs approached Adriana and said she was sorry, and apologised for not having taken more care.
The takeaway for clinicians is clear: every patient, no matter their condition, could have their quality of life improved by AT. Clinicians need to use their medical knowledge and inquisitive natures to find the specific tool their patient will need.
“You need to be your patient’s advocates,” Adriana said, “Many of them don’t know what’s out there, they don’t know what they can use. You don’t know what their abilities are either unless you let them try to do something.”
Clinicians need to advocate for technology to help their patients
“Don’t limit patients based on other people’s biases. Give them options.”
The popular thinking among AI enthusiasts who try to predict the future progress of this technology is that people overestimate the pace of change in the short term, but they underestimate how much progress will be made in the long term.
Often the most fantastical visions of the future portrayed in popular sci-fi tales focus on able-bodied protagonists who are able to do things which transcend what we are currently capable of, but it’s inspiring to think of how people with disabilities would conceive of their ideal future.
Adrian said: “Back in the day, we thought by 2000 we’d be living like The Jetsons. But, I think that would be amazing. If we just lived how The Jetsons lived, and everything was automated, and they had voice command. Everything just being so accessible.”
“If someone with a disability lived in that type of environment, they wouldn’t need anybody. Of course, I would like to socialise! But other than that, I wouldn’t be reliant on other human beings.”
“Able-bodied people love AI because it allows them to simultaneously do many things. But for someone like me, it just allows me to do something. It allows me to do that something that able-bodied people take for granted and are already able to do.”
This article originally appeared in AIMed Magazine issue 05, a Deep Dive on Robotic Technology and Virtual Assistants which you can access here.
References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024361/
