How videogames became a weapon in the fight against childhood cancer
How videogames became a weapon in the fight against childhood cancer
Ayoung nurse stood on a chair in the waiting room of the Lucile Packard Children’s Hospital at Stanford University, California, on an overcast Thursday morning in late October 2015. She was hanging Halloween decorations from the ceiling. Cotton spiderwebs framed two large windows overlooking an interior courtyard. Shiny black witch’s hats stood at attention on tiny, pastelcoloured tables. Pumpkin-shaped string lights looped around furniture corners and light fixtures. On the wall, below the permanent posters of Marvel superheroes and Star Wars characters, someone had stuck a life-size laughing skeleton.
A four-year-old girl with wiry blonde hair sat patiently on the waiting room couch, a multicoloured surgical mask over her mouth. Jacob Lore, a recreation therapist, walked in holding a large folder and two iPads. The girl waved him over. “Hello,” she said, standing up to greet him and putting one of her tiny hands on his hairy forearm. “Hey Maya,” Lore said, sitting down next to her and offering her one of the iPads. “Want to play a game?”
Maya reached out for the iPad and, without another look at Lore, began playing a chaotic-looking firstperson shooter. A swarm of grotesque-looking creatures descended from the top and sides of the screen; Maya deftly tapped the screen in various places, deploying different powers to disperse them. “Wow, Maya, you’re doing really great,” Lore said encouragingly. Maya ignored him. “What level are you on?” Lore tried again. “Eight,” she said, and kept playing. Lore looked amused. “Once they start playing, there’s no getting anything more out of them.”
As a child life specialist in the hospital’s oncology ward, Lore’s job is to help young patients – who range from infants to late 20-somethings – adjust to hospitalisation. This means constantly talking to patients about their diagnosis and treatment in a language they understand, and creating an environment in which they feel safe. Lore likes to be present when younger patients like Maya undergo a procedure like getting an IV drip put in – he’ll often sit beside them, asking them questions or showing them pictures or videos to distract them. The hospital’s playroom – a brightly lit classroom space with toys, an art corner, a small kitchen, and a recreation room with televisions, videogame consoles and iPads – is a designated “safe space”, meaning doctors and nurses can come in and talk to the kids, but they cannot administer medicine or discuss treatment while inside. There’s no talk of chemotherapy or checkups. “This is
the one space they can come in to play without having to worry about someone coming in and saying or doing something that scares them,” Lore said.
Before the iPad, Lore used to use a felt board to teach younger patients about things like chemotherapy and red cells and white blood cells. “But when things like iPads came along, I was having real trouble pulling them away from the screen to get them to look at a felt board,” he said. In 2008, Lore was approached by a paediatric oncologist named Gary Dahl about a videogame Dahl was helping develop with the aim of informing young cancer patients about diagnosis and treatment. The game was a thirdperson shooter in which players pilot a microscopic robot named Roxxi through the bodies of fictional cancer patients, blasting away cancer cells. It was slow to load and required several disks (the first version of the game was released in 2006), but Lore noticed it essentially fulfilled the same function as his felt board.
This was the game Maya was playing; at least, a newer version of it: shorter, quicker, and available on mobile and tablets. After another ten minutes, she logged out of the game, and began running her small finger across the iPad screen, searching for something else. “What are you looking for?” Lore asked. “Angry Birds,” she replied. Lore sighed. “I’m always losing out to Angry Birds.”
The Re-Mission games were developed by HopeLab, a private nonprofit based in Redwood City, California. The company was founded in 2001 by Pam Omidyar and her husband, Ebay founder Pierre Omidyar, to develop apps and games that improve the health of young people. The original
Re-Mission was the lab’s first game, made in the hope of encouraging young cancer patients to get more involved in their treatment by targeting specific psychological and behavioural outcomes, like motivation and self-efficacy. It’s not just the grim environment of hospitals that can negatively impact a young person’s ability to follow treatment: it’s hard for young patients to remember to take their medicine full stop. Regular habits and consistency is not something they are overly familiar with. Pam Omidyar believed that helping young cancer patients visualise their body’s response to cancer might help motivate them to take a more active role in treatment. If they could just see how hard their body was working to repel the cancer, they’d be compelled to give it their all.
It was 1989. Pam Omidyar was a 22-year-old college graduate working as a research assistant in an immunology lab at Stanford University. She’d moved to California to be with her boyfriend, Pierre, who worked as a computer scientist. At the lab, her job was to grow different cancer cell lines so that the scientists could experiment on them. Sometimes, she assisted them, but her main job was to keep these cell cultures healthy. She spent her days staring down the barrel of a microscope, watching T-cells battle cancer cells.
“The idea was to find cell-specific markers, markers on the surface of cancer cells that cytotoxic T-cells could attack and kill in a very specific way,” she said recently. At night, her and Pierre would play videogames on their Sega Genesis. On the weekends, they’d go hiking or mountain biking.
The professor Omidyar worked for was a paediatric oncologist. Gradually, she began thinking about the kids whose cancer cell lines she was growing. “She could see this epic struggle taking place in the body of cancer patients, but she knew that cancer patients didn’t feel like there was that much of an epic struggle,” Steve Cole, HopeLab’s VP of research and development, said recently. We were sitting in a small, functional boardroom inside HopeLab’s modest offices in Redwood City. Omidyar declined to attend – she preferred to talk via email.
One day, Omidyar pictured her job in the form of a videogame. She was the protagonist, tracking down cancer cells and attacking them with T-cells from a cool-looking laser gun. What if there was a game that utilised the same principles, but funneled them into something that really mattered, like a young patient’s attitude to fighting cancer? “She put those two things together and said, ‘You know, if I can just show people cancer in the context of a game where they can battle it, then they are going to feel different about it,’” Cole said.
But videogames cost millions of dollars and hundreds of people to make, and Omidyar had no idea where to even begin looking for those kinds of resources. She dropped the idea. Then, in 1995, Ebay launched. Suddenly, Pam Omidyar had everything she needed.
On a sunny afternoon in the fall of 1999, Omidyar wandered into Stanford’s development office and asked whom she could speak to about making a videogame about cancer. She was shown to Gary Dahl’s door, the paediatric oncologist. Dahl immediately agreed to help and sent her to Pamela Kato, a Stanford health psychologist who shared Omidyar’s love for videogames. Kato was wrapping up a postdoc at Stanford in paediatric oncology. “I remember Gary coming to me and saying, ‘There’s this lady that made a lot of money in Silicon Valley and she wants to make something for kids with cancer,’” Kato said recently. “And I said, ‘OK, Gary, does she just want to give the kids a toy to make them feel better, or does she want to do this right?’”
Dahl told Kato to shut up and just go to the meeting. Kato was immediately taken with Omidyar’s sincerity. “I’ve seen people waste money trying to help kids but they don’t know what they’re doing,” she said. Dahl told Omidyar, “This may be the first time I’ll be able to offer my kids a sense of control over their disease.”
Initially, Kato worked as a consultant, writing proposals on how a game about cancer would look, how it would play, and whom it would benefit. She made contacts with game designers and publishers. “The game wasn’t intended to be clinical – it wasn’t a new form of chemotherapy – but we believed it could help kids while they were going through this challenging part of their lives,” Omidyar said. She didn’t have an office; her and Kato met in coffee shops to give each other updates.
While Omidyar and Kato tried to come up with an actual methodology for developing the game, Dahl, a hard-nosed medic, warned them the chances of success were slim: “There’s not a lot of evidence that this is going to actually work,” Cole remembered Dahl saying. “But I can tell you one thing: if your game can help my kids take their maintenance chemotherapy more reliably, or help them report symptoms at an earlier stage, that will make a huge difference.” Dahl knew that young cancer patients died much too often, precisely for those reasons. If there was some way to help them remember to take their treatments, or motivate them to become more active and interested in their recovery, it could translate to an increase in survival rates.
That’s when Kato called an old grad school friend named Steve Cole, who was working as a professor of medicine at UCLA Cancer Center. “Steve, you’re the only person I know who knows the backstory of the cells who can also speak the language of videogames,” she told him. “Help me turn this into a game.” Cole agreed and came onboard as a consultant.
The problem now was the game itself. Because its primary function was not entertainment, it would require different design and production parameters to make. No one seemed to know where to turn next. Omidyar reached out to major game developers “at the level of EA, Microsoft and Nintendo”, although she did not wish to name them. But no one was interested in taking things further. “In a business context, they couldn’t justify the expense of creating a game for a small segment of the population,” Omidyar said. “They didn’t have the imagination to see how we could make a game about cancer cool and beautiful.”
Omidyar and Kato knew they needed videogame designers, but it was difficult to find any willing to work alongside physicians. Physicians didn’t understand the process of game design, and game designers didn’t always want to include the clinically relevant information that Omidyar thought was important to achieve the game’s purpose. “Game designers are fabulous at motivating kids to keep playing a game, and that’s what we wanted – we wanted a game that kept kids playing by using the incentives and challenges that make games so engaging. But we also needed to put content into the game that would make it relevant to the cancer experience and help kids better understand their disease and how to fight it,” Omidyar said.
Adherence to medication is crucial in cancer treatment. Ideally, the game would help young cancer patients to understand the correlation between the amount of chemo in their body and the ability of cancer cells to replicate the moment they stopped chemo. Omidyar and Kato would sit around coffee shops in Mountain View trying to imagine what such a game would look like. They thought it would work best set in the bloodstream. “What would it look like to actually navigate through the bloodstream in the heart? You’d have to wait for the valve to open, and you’d shoot through,” Omidyar said. “Then you’d get stuck, and you don’t want to damage
“They couldn’t justify the expense. They didn’t have the imagination to see how we could make a game about cancer cool and beautiful”
the heart, so you have to hold firing and get to the next location. We talked through all that.”
There was also the issue of videogames’ public image. At the time, games were more or less seen as the “enemy of civilisation”, as Cole remembered. Games had been blamed for the Columbine High School shooting in 1999. Two years later, Rockstar’s Grand Theft Auto III generated heated debate about the nature of violence and sexual content in games. There were claims the game glorified, even encouraged, criminal behaviour. Violent games became the subject of frequent media reports. On 25 June 2003, teenagers William and Josh Buckner shot and killed Aaron Hamel and Kimberly Bede.
They claimed they were inspired by GTAIII. In October the same year, Hamel and Bede’s families filed a $246 million lawsuit against Rockstar Games and the companies associated with distributing the game. US senators began referencing studies on violent games and aggression. (There remains no definite link between the two. Some studies argue that videogames have a negative impact on the behaviour of young adults, however, in some cases, these conclusions were drawn from isolated incidents involving randomly chosen participants showing mild signs of aggression and anti-social behaviour immediately after playing a violent videogame – things like cutting off the person in front of them while walking out of the study, or not saying “please” or “thank you”.)
According to Cole, these studies were often correct about the potential of interactivity to influence behaviour – but incorrect about how that potential is realised. “Most videogames are not very impactful, either positively or negatively. You really have to work hard to make a videogame impact on someone’s behaviour – it’s not actually an easy thing to do, in our experience. So I think the generalisation that games routinely do this stuff is wrong.”
Omidyar used the debate about violent games to her advantage: if some people worried that games had the power to motivate bad behaviour, the best thing she could do was use the same argument to show games could motivate good behaviour. In 2001, she set up her own company, HopeLab. She reached out to physicians, patients and their families to get insight and data into the struggles faced by young cancer patients. Then, she turned to the question of development and distribution. Should the studio work with outside developers, or hire a team in-house to design the game?
After testing out several game concepts on young cancer patients at Lucile Packard Children’s Hospital, HopeLab finally settled on a final design from an LA-based game design studio called Real Time Associates. The first version of Re-Mission was completed in 2005, but Omidyar wanted one more assurance that she was on the right track before releasing the game. Specifically, she wanted the support, and respect, of the medical community. So, in mid-2005, she assembled a large, randomised controlled trial of Re-Mission. This is a trial in which participants are allocated at random to receive one of three
“You really have to work hard to make a video game impacts on someone’s behavior – it’s not actually an easy thing to do, in our experience”
things: the clinical intervention (a drug or in this case, a videogame) being tested; a placebo; and no intervention at all. “A randomised controlled trial was, and still is, the gold standard for testing,” Cole said.
Cole began the “gargantuan struggle” of wrangling a team of 34 different medical centres across the US, Canada and Australia, each recruiting teenage cancer patients. The population of adolescent and young adults with cancer is relatively small, meaning in order to get the sample size needed for a randomised clinical trial, HopeLab needed to recruit from a large sample size. The final number of patients – 374 – seems small, yet it made the study one of the first and largest to focus on adolescent cancer patients. HopeLab managed to secure funding for the trial from The National Cancer Institute, who told Omidyar she was crazy for trying to do the whole thing in a year. It would take at least five, they said.
During the study, patients were asked to play Re-Mission as much as they wanted to, with the stipulation that they play at least once a day. At Stanford, Dahl approached Lore to help him recruit patients. “It took a while for some of the younger patients to get it, but a lot of the older kids responded to it,” Lore said. “The point was to teach them about their treatment – so, for example, yes, the chemo makes you feel bad, but at the same time, this is why we need to do it. This is why you lose your hair.”
In the end, the study was completed in under a year, like Omidyar wanted. What’s more, it proved her assertions about the game were correct. The control group received PCs preloaded with a popular videogame; the rest of the participants received PCs with the same popular videogame, plus a copy of Re-Mission. It was Kato’s belief that the kids who played Re-Mission would be less hesitant about their cancer treatment, and overall show more willingness to get better. After three months, the research team found the patients who had played Re-Mission had taken their antibiotics more consistently and with less resistance or complaint and, surprisingly, maintained higher levels of chemotherapy in their blood compared to those in the control group. The Re-Mission kids also seemed to know a lot more about their cancer than the control group after the study was finished – things like the names of particular cells and the biological processes involved in each of their treatments. (The results of the study were published in the peer-reviewed medical journal Pediatrics.)
But, while the game seemed to be working, in the sense that patients who played it were paying more attention to their treatment and seemed to be more motivated to take their medication, it was hard to tell where the self-advocacy was coming from: the textual information in the game, or the act of playing the game? (The game was preloaded with all kinds of information, including some possibly overlong cutscenes about all the bad things that would happen to Roxxi if she didn’t take her medicine, and so on.) Was it possible to separate the information from the motivation and see which was having a stronger effect?
Around this time, Cole officially joined HopeLab as the vice president of research and development. After studying the results of the study closely, Cole reasoned it wasn’t the information in the game that was having the most impact, but the motivation. To test this, HopeLab partnered with Stanford to conduct a functional magnetic resonance imaging (fMRI) study in which the brain activity of patients playing Re-Mission was monitored and compared to that of patients who were only watching the game. The results, published in the journal PLoS One in March 2012, showed that neural circuits in the brain related to reward and motivation lit up only in participants who played
Re-Mission, and not in those who simply watched, explaining why active players were more likely to change their behaviour and attitude in relation to their treatment.
Cole paid careful attention to see whether it was the information processing region of the brain that was lighting up when patients played Re-Mission, or whether it was regions to do with sustained positive motivation and goal-seeking. “By the time we had done all of these follow-up studies, we were pretty convinced that it was really about that act of playing itself – the chasing cancer cells and learning more about them and getting further in the game – which was turbo charging the good behaviour in the patients.”
It seemed unlikely that the patients were forgetting how to take their maintenance chemotherapy, or forgetting the basic principle that maintenance chemotherapy is important for fighting cancer. They all knew all this. More information would not be helpful. But, making kids feel like maintenance chemotherapy was a kind of ammunition for a gun or rocket launcher that they could use to fight this epic foe threatening their wellbeing was a different story. There was also the active versus passive element: why weren’t the kids who were watching the game experiencing the same positive behavioural changes as those who were playing it? “The empirical answer is if you watch something passively, your visual cortex lights up – you know the information is coming in,” said Cole. “What’s different is where that information goes.” In other words, how does the brain utilise that information? The area of the brain particularly responsive in participants playing Re-Mission was the area that drives goal-seeking behaviour.
Once people know they are in charge of an outcome, they will fight hard to win, even if they don’t particularly care about what they are winning. “I mean, you can give them a dead fish at the end of the day, they don’t care – they just want to win the game.” Game-playing participants also appeared more aroused – their brain was moving around information much quicker, and to more places, than the brains of non-gameplaying participants. Finally, Cole noticed the hippocampus – the center of emotion and memory in the brain – of gameplaying participants was lighting up pretty regularly compared to non-game-playing participants, meaning that those playing the game were much more likely to form long term memories of their experience than those simply watching. “So if you
wanted to take a piece of information, get it into a person, and then have them do something that is going to stick with them over time, these are the three things you’d really like most to see. One, a lot of positive motivation to do something with the information; two, evidence that their brain was moving the information around and processing it; and three, some proof that their brain was steering this information into long term memory.”
Jo Lennan, 31, was diagnosed with cancer two years ago. She underwent eight months of chemotherapy starting November 2014. After one surgery, her doctors gave her a choice: continue taking ketamine, a mild painkiller that can cause hallucinations and nightmares, or switch to a stronger drug. Lennan chose to stick with ketamine, even after experiencing a particularly bad nightmare. The experience was rare, she said. “It doesn’t come naturally to some doctors to empower their patients’ choices. More often, they would prefer to weigh things up themselves and then let you know what you’ll be doing. As human beings, though, we usually want reasons to do things, and ‘because I say so’ isn’t as illuminating or motivating as knowledge can be. That’s as true for kids as it is for adults.”
Re-Mission was released in 2006 to near unanimous commendation from the international medical community. The encouraging results of both studies led HopeLab to invest in
Re-Mission 2, a collection of free online games playable both in browsers and on mobile platforms that adhere to the same principles as the original, only with more gameplay and less informational cutscenes. Game levels start out shorter and easier, game objectives are clearer, and targets more obvious. The gameplay is optimised to help players feel a sense of quick initial accomplishment and progressive growth in skills. The intention was to make Re-Mission 2 easier to play, and thus appeal to a wide range of ages and both genders.
By switching to a series of smaller minigames, HopeLab was also able to develop Re-Mission 2 at much less cost (Cole estimates Re-Mission 2 cost one-tenth of Re-Mission’s budget to develop), and use multiple game designers to ultimately create a variety of different gameplay styles. It also allowed HopeLab to do user testing progressively throughout the game development process, rather than waiting until the game was complete and hoping that it worked.
Both Re-Mission and Re-Mission 2 are currently available for free to young cancer patients and institutions in over 80 countries and in partnership with organizations including the Starlight Children’s Foundation and the Entertainment Software Association, the gaming industry lobby. At the time of writing, more than 210,000 copies of the original Re-Mission have been distributed; Re-Mission 2 game downloads have also surpassed the 200,000 mark and more than 400,000 game levels have been completed by players.
“This whole venture of doing a serious game was really a shot in the dark,” Kato said recently. “We knew we wanted to focus on adherence, and we knew you can’t get that out of showing someone a video or telling them or writing a brochure. If you’re a kid with cancer, it’s scary. You know you’re supposed to take your pills. You know if you do it you will live longer. But when you take your pill for chemo, the immediate reward is that your hair falls out, your face blows up and you’re sick all the time. Re-Mission made it empowering to have to go through all this. It made the kids feel like they were in control, for once.”
HopeLab’s success with the Re-Mission games inspired the studio to broaden its focus to other areas that might benefit from a videogame solution. Looking at the landscape of youthcentric health issues, HopeLab settled on childhood obesity, a growing problem increasingly cited by health experts as a danger to the health of Americans today. According to the US Centers for Disease Control and Prevention, childhood obesity has more than doubled in children in the last 30 years; in 2012, more than one third of children and adolescents were overweight or obese.
The Re-Mission studies had proven that it was possible for a videogame to positively influence behaviour in young people.
Fred Dillon, HopeLab’s director of product development, has helped steer the company away from sick care and towards prevention. “Rather than focusing on helping young adults fight a disease once it has already taken hold, we realized we could actually create tools that support health and wellbeing early in life, and help keep them healthy,” Dillon said recently.
To better understand the target demographic, HopeLab interviewed 25 middle-schoolers around the US about everything from their eating and exercise habits to their preferred leisure activities. “It’s the age when kids start to figure out whether they’re a sport kid or not,” Dillon said. The studio then identified where a game would be likely to have the most impact: was it on the eating and calories part of things, or the exercise part?
Ultimately, it was decided it would be much easier to motivate kids to exercise than to get them interested in nutrition, particularly as kids often have little control over what they eat in the first place. HopeLab also wanted to hear from the kids themselves, so the studio launched a competition asking children to submit ideas for products that would increase physical activity. A lot of what came back was based on a simple action-reward structure: one kid submitted an idea for a version of Dance Dance Revolution, but with texting – so kids would text with their feet.
The result was a platform of games named Zamzee, whose aim is to measure kids’ physical activity and reward them for it. Kids (and their families) can earn gift cards through the platform for completing certain physical challenges. The rewards range from monetary (gift cards at a $5 value to places like Amazon or iTunes); pro-social rewards like contributions to a selected charity (ASPCA, participant’s school, Save The Children, and so on); and virtual rewards, such as avatar items and graphical ‘badges’ that appear on users’ home screens.
Early pilot tests conducted in partnership with local schools
and universities showed an increase in physical activity of up to 30 per cent. Usually, pilot tests lasted from six to 12 weeks, with 60 to 100 kids. In a six-month, 448-person randomised, controlled study, HopeLab found that kids using Zamzee were 59 percent more active than a control group. (That’s the equivalent of doing an extra 45 minutes of non-stop pushups each week.)
It’s Dillon’s wish for HopeLab to broaden its focus beyond gaming. This means working with everyone from for-profit organisations to healthcare providers to universities – anyone with a vision on how to use technology and games to improve areas like health and psychology. Recently, the lab partnered with the Yale Center for Emotional Intelligence to create an app which tracks users’ moods throughout the day. Called the Mood Meter, it was originally based on a visual aid in Yale classrooms. The app enables users to plot their feelings, and select strategies to manage each feeling. They can also schedule reminders to update the app throughout the day on mood changes. “We’ll work with anybody who wants to make the world a better place,” Cole, who is still with HopeLab, said recently.
Back at Lucile Packard Hospital, Lore took us to visit Andrew, a 12-year-old whose leukemia had relapsed. Andrew eyed the iPad hungrily as Lore approached, conceding that while Re-Mission 2 is hard, he likes it because it gets his brain moving. “It does make you think about [cancer]. It gives you a better idea of what’s going on inside your body.” Later, Lore visited Mirella, a seven-year-old with leukemia in the room next door to Andrew’s. She was in the middle of an argument with her mother about taking her liquid Tylenol. She said it tasted bad. She lay curled in the fetal position on the bed, her small, hairless head the only thing visible above the blankets. She eyed Lore apprehensively as he approached. “Look, Mirella, I’ve got a game for you.” She saw the iPad in his hands and reacted instinctively, throwing the covers off and sitting upright.
Lore handed her the iPad and asked if she’d be interested in playing a new game that would help her feel better about her cancer. She nodded, and Lore clicked on the Re-Mission 2 icon. She began playing without waiting for Lore’s instructions, getting the hang of the game as she went along. Every time Lore would explain something, she would just nod, her eyes glued to the screen.
Mirella’s mother watched on. “What did you say this game was called?” she asked Lore. Lore explained the concept. “We sometimes use it to help kids understand what cancer is and why it’s important for them to keep fighting,” he said, talking to Mirella’s mother but keeping his eyes on his young patient.
After ten minutes, Lore told Mirella it was time to take the iPad to another patient. “Did you like the game?” he asked her. She nodded, not unenthusiastically. “Now,” Lore continued, “how about that Tylenol? It won’t taste so bad, right?”
Mirella threw him a look, as if to say, I know exactly what you’re doing, and it won’t work. But when her mother picked up the syringe of bright pink liquid, she didn’t protest.
“Rather than focusing on helping young adults fight a disease, we realized we could create tools that support health and wellbeing”
This is an extract from Power Play: How Video Games Can Change The World. It’s available now in hardcover from bit.ly/pplaybook
Laura Parker is an author and journalist for The New Yorker and The New York Times
Asi Burak, chairman of Games For Change, which promotes games as a positive social force