Artificial intelligence is helping to create an enduring legacy for a 24-year-old man with a rare skin condition that is likely to end his life prematurely, a London health technology event heard last week. Julian Blake reports.
Liverpool-born photographer James Dunn lives with epidermolysis bullosa (EB), a genetic skin condition that causes his skin to fall off and blister at the slightest touch. The condition – which has no known cure – leads to aggressive skin cancers that can be fatal.
He is in constant pain, and relies on a specially adapted wheelchair and car for his mobility.
Dunn – who came to national attention after appearing on BBC’s Big Life Fix in 2016 – has been collaborating with London-based Ai developer Pete Trainor to create a legacy after his death, to help people who come after to understand and learn from his experience.
Speaking at last week’s GIANT Health Event, Trainor said the pair had been working to adapt his firm’s in-house Nexus Ai platform, which “effectively allows people to create an archive of facts and information” into a legacy resource that contains Dunn’s knowledge and wisdom.
“James wanted us to make an archive record of his thoughts and his memories so that his nieces and nephews could have conversations with him when he’s no longer around,” Trainor explained. “Would it be possible for people to have conversations with James all over the world that suffer from EB? If he wasn’t here in 18 months, how would people be able to have those conversations?”
Trainor deployed £35 Amazon Echo voice interfaces to help Dunn build his archive at home. “As a result James is now able to do things that he couldn’t do 18 months ago, like switch on the lights and TV. But he’s also using them to put his voice into text and record some of his memories and background.”
“Everybody with a condition like EB knows that they could be living their last days, and wants to leave some kind of legacy,” Trainor added. “There are people like James deploying their memories into this wonderful thing called the internet, so that people can make sure that this life of punishment has not been in vain.”
Trainor, leading a GIANT session on artificial intelligence in health and human support, unveiled a new phase of the legacy project, with the pair working with London-based startup BotsAndUs on a version of its four-foot Bo ‘social robot’ droid (pictured).
In line with Dunn’s preference for his legacy Ai, said Trainor, the Bo is deliberately not a humanoid robot. It is also not yet able to recreate his voice. “That is a major limitation at this point,” he acknowledged. “But in theory, in the next couple of years, we can do it.”
“The hardware and the memories are so disjointed that what we are looking at is a future”, he added. “But the conversations that we are having about Bo are giving James an awful lot to live for and a lot of hope.”
Dunn has used the media attention he has received since appearing on Big Life Fix as an opportunity to raise awareness, running a #FightEB campaign to highlight the disease. Last month he launched a £500,000 appeal to help find a cure for the disease. “Help the people I’m going to leave behind with this condition,” he says in his appeal video.
Dunn had been due to appear on stage at last week’s event – but in a WheelyGood YouTube post he explained that he had just had a new diagnosis of skin cancer, related to his EB condition.
The Big Life Fix series shows how technology can help people move beyond physical disability to live their lives with some normality. Through the show, Dunn met inventor Jude Pullen, who came up with a way for him to take pictures remotely, using a camera rig and tablet, overcoming the disability that comes from his EB.
On stage with Trainor at GIANT was Emma Lawton, who also featured on Big Life Fix, working with Microsoft inventor Haiyan Zhang on a wearable device to help overcome the tremors she suffers through Parkinson’s Disease. Lawton appeared with Zhang at DigitalAgenda’s Impact Awards event at London’s Barbican in March.