Seeing through the eyes of your child — empowering empathy

For this eye-for-innovation story, I sat with Sara McCracken, CEO of Angel Eyes — a charity based in Northern Ireland that provides guidance to the support networks (primarily parents) of children diagnosed with a sight impairment. We talked about the challenges parents, teachers, and care workers face, about the complexity of sight impairment, and how Sara's charity has used VR to raise awareness and understanding through experience.

As she says, it's easier to understand something when you experience it. Experience, as opposed to theory, helps to build that all-important ingredient — empathy — so that you can provide your child with the right level of support. Also on the call was Dr. Alec Kingsnorth, the technical lead on the Angel Eyes VR project.

Throughout our chat, what struck me about Sara was her eloquence and passion for helping kids. She knows first-hand what it means to be a parent with a sight-impaired child and is well versed in helping others. She says she even thinks like someone who is visually impaired.

In this post, I talk about the journey Sara has been on since she first received her children's diagnosis, the charity she has built, and how her belief in technology brought us together to talk about the crucial role of eye tracking and the significance of experience in building empathy.

According to the World Health Organization, about 2.2 billion people live with a vision impairment. Most of these people are adults, and almost half of them could be treated with the proper care. However, the picture is very different when it comes to children.  In the UK, for example, the prevalence of severe sight impairment is estimated to be around 0.05% — that's 1 in 2,000 children under the age of 16. That puts childhood vision issues in the low incidence bracket, which is another way to say little or no research funding.

At six months, Sara’s twins (a boy and a girl) were diagnosed with severe vision impairment due to a rare genetic condition. Like any parent who receives traumatic news about their children, Sara’s life changed in that instant. At the time, she felt confused, lost, and uninformed. And just like the parents she now meets every day, her burning question was: 
What can my children see?

To add to her confusion — and this happens a lot — was that although her twins were diagnosed with the same condition, the impact on each child and what they can/cannot see was different.

It seems strange to me that a parent should experience this kind of bewilderment. I've always viewed vision impairments like longsightedness and myopia as common. But as Sara points out, the types of vision impairments we're talking about can be severe, conditions that are more prevalent in adults, particularly as we age. Consequently, national health services are better dimensioned for adult-related issues, leaving sight-impaired children's parents in the dark.

And if that's not tough enough, the nature of vision impairments in children makes it extremely hard to predict how a child's condition will progress. The trauma and uncertainty don't make it easy for parents to help their children cope with their disability. Over-supporting can lead to disempowerment, and lack of empathy can lead to well-intentioned but incorrect support.

By founding Angel Eyes, Sara wanted to make the world more accessible for blind and partially sighted kids to ensure access to the tools they need to flourish.

One of the first things parents traditionally have to deal with is the clinical jargon of a diagnosis. Conditions can be mild, moderate, or severe. In many cases, kids will have several impairments layered on top of each other, making it even harder for the people in a child's support network to understand.

She says, “I want these kids to be understood and to have as much independence as possible. For the parent to become the best advocate for their child, to give their children the wonderful advocacy skills so they can take ownership of their disability, which means being able to communicate effectively to people so that they get the proper support. In the experience that I've gone through, I've found there's a one-size-fits-all approach to vision impairment, which is a low incidence disability for children. Only 4% of people who are registered as sight-impaired are children. Being born with a vision impairment is not a run-of-the-mill situation.”

The NHS in Northern Ireland provides a kit that includes 10-12 pairs of plastic glasses with scratched or opaque lenses — a rudimentary approach to simulating an impairment. Sara says that Angel Eyes stopped using the kit many years ago because they found it gimmicky.

Betting on technology

Sara looked to tech for a solution but was surprised to discover that nobody was developing anything relevant. Taking matters into her own hands, she attracted funding from a Dragon’s Den-like competition for charities, found a clinical lead in the form of Professor Jonathan Jackson — who is currently head of optometry at the Royal Victoria Hospital Belfast. And with the help of the British Computer Society, she connected with Sentireal — a Belfast-based ISV specializing in immersive AR and VR solutions. Together, they developed a VR proof-of-concept (PoC) solution on an Oculus Rift called EmpathEyes, which could simulate a range of vision impairments in various degrees of severity, and most significantly, layer them.

Since its completion in 2018, Angel Eyes has been using EmpathEyes in their visual awareness consultations with parents and families to great success.

The addition of eye tracking

But there was still something missing. Common impairments such as visual field loss follow a person's gaze. The only way to simulate such conditions is to leverage eye tracking. Unfortunately, when Angel Eyes and Sentireal were developing their solution, there weren't any commercially available headsets with native eye tracking on the market. I'm happy to say that VR has changed a lot in just a few years.

Fast forward to September 2020, Angel Eyes received a grant from the National Lottery in Northern Ireland to push the project forward. By the time I spoke with Sara and Alec in August this year, they had migrated the PoC to a PICO Neo 2 Eye and added the scenes that use Tobii eye tracking to simulate visual field loss. Today, the technical side of that project is complete. All that’s left to do is the evaluation.

Dr. Kingworth notes, “Native eye tracking was the number one reason why we chose the Pico headset. Because if you've got a condition that affects your eye in the center, no matter where you look, it's there if you look to the right; if you look to the left, it's there. If you programmatically put something in the middle of the screen, you can just move your eyes and look around it, but with eye tracking, we can make sure that the vision blocker is present no matter how you move your eyes. So that gives people a realistic understanding of what it means to have a visual field loss impairment.”

Alec’s clear excitement about native eye tracking reflects what I’ve experienced with other developers and ISVs. I think it’s because eye tracking allows you to mimic the way people interact with the world, which raises the sense of realism of a VR experience. Say, for example, you want to adapt a VR experience based on the user’s cognitive load — just as we would in real life. In tough situations, people tend to slow down, focus on what’s critical. With eye tracking, you can simulate that in a VR experience by reducing the complexity of a scene. Eye tracking is also essential for social communication in VR applications. You can, for example, use it to simulate eye contact, avoiding the uncanny avatar stare.

Alec says, “From a developer’s point of view, I was a bit wary at first. I was concerned about the potential lack of quality of the technical documentation and whether the SDK for Unity was good enough. As it turns out, I had nothing to be concerned about. They were both easy to use. I would have liked access to a few more examples of how to leverage eye tracking. I had to do a lot of math to get it to work, and it took a while to figure that out. But apart from that, I really like the headset. We could lock the headset to just our app (kiosk mode), which makes it easier for people to use. And so while we bought it for the eye tracking features, we were really happy with it in other ways.”

Sara, for example, mentioned how easy it was to clean — an essential factor in any healthcare environment and critical during covid times. Alec mentioned the comfort factor, saying how it was easy for him to put the headset on somebody else's head — lowering the barrier for older generations who may not be used to VR. He also talked about the importance of remote controlling a simulation so that parents and carers can focus on the experience rather than negotiating unfamiliar tech. And they both spoke about the edginess of VR and how it enhances training sessions that might otherwise be heavy-going presentations.

Angel Eyes will begin the six-month evaluation project later this year, working with about 50 families (about 100-150 people). Once the project is complete, they intend to use it in their training services — meaning visits to clinics, schools, or homes guiding small groups of people through the simulation.

The next step — commercialization

There is a massive opportunity for Angel Eyes to adapt their VR experience and commercialize it as a means of getting funds into the charity.

Sara says, “For me, it's all about the kids — that's my passion. But while we were doing the PoC, the response from clinicians was adults, adults, adults. Primarily adults with dementia — where you will always have a visual impairment. Whenever you have a visual impairment that's not supported because the patient might be non-verbal, for example, the disability can be perceived as a cognitive one — ensuring the visual impairment remains undiagnosed. Allied health professionals are saying that if this solution could be adapted for the adult market, it will be revolutionary.”

Since Sara founded Angel Eyes, she has helped over 800 families. With the VR solution, the potential to spread awareness and generate empathy is widespread. I am looking forward to the adaption for the adult population and how that will be a great source of funding for the charity. For me, I am yet again thrilled to talk to someone who appreciates Tobii's technology for how it can empower people. It was so nice to experience Alec's and Sara's genuine excitement when they talked about it — thank you for that.

If you would like to find out more about vision impairment in children and the great work Sara’s charity does, check out the Angel Eyes website. Since the Pico Neo 2 Eye was launched, it’s been welcomed by healthcare application developers, and I’m sure Alec will be delighted to know that its successor, the Pico Neo 3 Pro Eye, is now available.