No Isolation: the robot combatting loneliness in chronically ill children

The hardest thing about the hereditary syndrome Jade Gadd developed at the age of 13 wasn’t the pain, even though that could be hard. Hypermobile Ehlers-Danlos Syndrome affects every system in the body, but not at the same time, so Jade never knows when she might lose her speech, or when her fragile bones might break, or when her skin might become so sensitive that she can’t bear being touched.

At 17, Jade has become accustomed to the changing nature of the disease. But she has always struggled with the loneliness that comes from long periods of isolation.

“I felt like I was disappearing from the world,” she says of the time after her diagnosis. “I used to go to after school clubs and have friends that felt like family. But when I came out of hospital they disappeared and I was devastated.”

Now Jade has a new social life through a robot called AV1 that she has nicknamed Bee. The robot is the creation of No Isolation, a Norwegian company founded two years ago with one big goal: to end loneliness.

The NHS estimates that there are more than a million children in the UK who have a long-term or lifelong illness and need medicines for the foreseeable future. Schools and other local authorities have a responsibility to make sure children with chronic illnesses receive a full education, but in practice, services can be slow and expensive. It took Jade a year to get a science teacher at home.

AV1 costs £1800 to rent for one year, which includes a 4G subscription and unlimited support. That sounds a lot, but it quickly earns its keep when a school has to pay for home tutoringin sever al different subjects.

Karen Dolva, the 26-year-old co-founder of No Isolation, describes AV1 as “a phone wrapped in a robot”. It is a small, white avatar, designed to sit on a desk with its head down until a remote user signs on at home through their tablet or phone. Then the head comes up and lights go on behind the the eyes, where there is also a camera, speaker and microphone. Unlike a phone, however AV1 has no screen.

“You’re not having your best day when you’re ill at home in bed. So we took away the screen,” Karen says. “The kids get it instantly, but they are more used to playing games and having avatars represent them than we are.”

AV1 is not only a pair of eyes and ears in a classroom. It also allows the user to respond to questions and hold conversations. One afternoon at the No Isolation office in Oslo, Karen shows me the iPad interface. It includes options to raise your hand, which is signalled by flashing lights. There’s a button to whisper, which brings the volume on the robot down so low that only someone with their ear pressed to the speaker can hear. Finally, there’s the option to signal that you are present, but tired and unable to talk much or answer questions.

“You can set a blue light so you don’t have to say, ‘Today I’m not feeling well,’ because that’s not always an easy thing to say,” Karen says.

No Isolation came out of a friendship between Karen, who had trained in user experience design; Marius Aabel, who specialises in electronics and hardware; and Matias Doyle, a software designer. They all worked at Startup Lab, an incubator and early stage investor, in Oslo around 2012. No Isolation was founded in the summer of 2015. The trio set out on months of research, talking to parents who cared for sick children and some whose children had passed away.

During the research, they became especially close with Anne Fi Troye, a Norwegian woman who lost her daughter to cancer 12 years ago. Since that time, Anne Fi had been doing whatever she could to help children with illnesses battle loneliness. The feedback helped the founders realise that children needed an avatar that could be present not just in the classroom, but in the breaks, so they can keep up their friendships and develop socially with their peers.

“The telepresence robot goes out on your behalf,” Karen says. “You have a presence every day so that you don’t miss anything. So the day you are there in the classroom, it’s not a big deal, because everyone spoke to you yesterday.”

Jade, who lives in the North East, was the first UK user of AVI, though there are about 700 AV1s in use across the world. She got used to using it in the holidays, when her dad would take it to the shops so that Jade could pick out her own fruit and toiletries.

Jade says: “It sounds trivial, but when life doesn’t have days or nights and you can count the people you see in an average week on one hand, being able to see Tesco is like traveling to the moon.”

Her maths teacher, Steve McArdle, said the difference to Jade’s wellbeing is huge.

“The maths and further maths programme is intensive and fast paced,” Steve says. “Jade has been attending lessons when well but through the link and our wider support programme she has so far missed nothing.”

The reaction from fellow students has also been positive. “[They were] excited at first and keen to be involved in the support programme,” McArdle says. “The avatar uses her normal desk and they see it as her, if remotely rather than a machine.”

AV1 cannot record sessions, just as a pupil could not record a lesson in class. No Isolation have worked with the Norwegian Government to make sure that the robot won’t breach privacy of teachers and students. Karen says: “That’s a big part of it, the teachers should not feel like they are being monitored or that the parent might be watching.”

No Isolation has had two rounds of funding. The first round raised €850,000 last February and then a seed round raised a further €2 million last November. The team is already onto its next business idea: a simple interface to combat loneliness in the elderly.

This so-called compassionate computer, or KOMP, is in the trial phase. It is designed to receive videos, links, photos and text and display them in a readable format, with no pop ups or clicks that might confuse older users.

“You have so many different types of loneliness: chronically ill adults, seniors, even city loneliness,” Karen Dolva says. “We can make a difference, we know we can.”