Co-designing Cancer Recovery

Social innovation design firm Hopelab sprang onto the scene in 2001 with Re-Mission, a video game designed to help young people adjust—psychologically and behaviorally—to life after cancer treatment. The product was, ahem, a game-changer in the field, and since then Hopelab has embarked on a number of projects aimed at improving the healthcare experience and outcomes for teens and young people.

In 2016, the group had another chance to develop a “blue sky” solution for the adolescent cancer community: a product that would leverage today’s technology to help young people with the psychosocial recovery and identity re-creation that often comes post-cancer.

dscout chatted with Hopelab President and CEO Margaret Laws about the firm’s work, and how they collaborate directly with teens in the research and design processes to create tech-enabled products that speak their language.

dscout: Hopelab’s Re-Mission project was such an innovation in healthcare and a real game-changer in cancer care for teenagers.

Margaret: The key to success with the original Re-Mission project was that the game helped young people develop a different relationship to their disease, a different kind of identity around what it meant to be a kid with cancer.

The original Re-Mission team spent a lot of time studying the physiological and emotional experiences around cancer, especially post-treatment. One of the big problems with young people who were in recovery was that they weren’t taking their chemo drugs, and what the team discovered was that there were psychosocial reasons for that. Post-treatment, the adults in young people’s lives are so happy that they’re “better,” so the narrative that kids hear from their parents and the medical system is, “You’re so lucky, you’re beating this disease.” But while kids do often feel lucky and happy, they also feel very disoriented. Many of them have been out of school for a long time, and maybe they’ve lost a little bit of their identity as a result. There are a lot of psychosocial needs like that which emerge as a result of going through cancer. Those things ended up being factors in their recovery care.

The reason kids weren’t taking their meds was not because they didn’t know they were supposed to, and it wasn’t because their doctors and their parents weren’t telling them to. They weren’t taking the meds because those were the things that really branded them as a “sick kid”—and often the drugs made them feel sick. They didn’t associate the drug with making them better, they associated it with having cancer. And so the original Re-Mission project was designed to address that psychology. The idea was to enlist the drug as a superpower, and help young people start to feel a sense of agency around taking their drugs, getting them to believe that they could persevere and really beat cancer.

And a big part of your mission and what’s made the work you’ve done with teens and young people so successful is that you’ve developed projects in concert with them.

Yes exactly, we work with young people as co-designers and developers, and they give invaluable input and feedback on the content and prototypes of the work. What’s critical is that our work fills a need young people really have—not a need we think they have, or their parents think they have, or their doctors think they have.

Obviously, tech has changed monumentally in the years since 2006 when the first iteration of Re-Mission was developed, and the way young people and teens engage with it has changed, too. In 2016, you set out to develop a new "blue sky" product that would help young people in much the same way Re-Mission had initially, but making use of today’s tech.

The tech had changed since 2006, but the problem we were trying to solve for was still rooted in psychological factors, and the psychosocial needs young cancer patients have in the post-treatment period. Because, as I said, it’s a shift. You aren’t going in for appointments anymore—that’s been your life for a couple of years, and all of sudden it’s done. From an adult perspective we think, “Okay, go back to your other life.” But when you’re a kid, your other life changes a lot in two years. And post-treatment, the risk for things like depression and anxiety is elevated. We know, from our research and the literature and studies on how people adjust post-treatment, that utilizing positive psychology skills would have a major impact and could help young people with some of the challenges they were facing. The challenge for us was to figure out how to deliver a positive psychology intervention digitally, in a way that young people would really consume and use to the extent they really needed.

What are the traditional, non-digital ways that that’s been done?

Talk therapy or group therapy. A lot of healthcare organizations or hospitals will offer or recommend certain classes. And in your area, or via your hospital, the class might meet weekly, at a particular site on a Tuesday night at 6:00 pm. And that may work or not work for you for all sorts of reasons. It might work logistically but not personally, or vice-versa. We looked at those kinds of existing standard practices as a baseline. One of the first ideas our team explored was actually a meet-up concept. But throughout the entire project, we worked with lots of young people who were in various stages of cancer treatment, some in treatment, most in recovery, in a very human-centered design process. And the feedback we heard from young people on that concept was that they wanted to meet other people like them, but that they didn’t want the thing that connected them to be just that they both had cancer. They wanted to meet up with other people near their age who had cancer, but who also liked video games or dance, or whatever it was that they were most interested in as a person.

So like any kind of product development cycle, we went through a number of different iterations. One of the big things that came out as we refined and refined the concepts was what young people didn’t want from a support network, and that was people worrying about them or pitying them. They felt they had enough people in their lives who worried about them or felt sorry for them, and they wanted a place to go where they could just vent or get nonjudgmental support. So where we landed was Vivibot, which is a chatbot that incorporates a set of positive psychology skills and a series of videos of young people talking about their feelings and their cancer experience.

Psychology prompts from a chatbot? How do those work?

There are seven positive psychology skills like gratitude and mindfulness, and Vivibot will ask you about a time when something has happened to you related to one of those subjects, and then it will serve up a video of another young person talking about an experience related to the subject. What was interesting was that we didn’t actually have to ask people to speak specifically about those topics—we just asked them about their lives and to tell us the story of their journey through cancer. And then we were able to match different pieces of those stories to the various positive psychology skills. It was a nice evolution of the product. And so far, in the small randomized trials that we’ve done, Vivibot has had a meaningful impact on anxiety. It’s on par with or better than other psychosocial interventions out there.

Really? Including live, in-person therapy?

The “in-person versus virtual” question has been really interesting. We asked young people at CancerCon, which is the big cancer conference for young people, whether they cared that Vivibot was a robot or a person. And several respondents said they liked that it wasn’t a person (but it is “person-like”), and only one who said they didn’t like it because it was a robot. Of course, this is not meant to replace in-person connection or therapy—there are certain things you want or need a person to talk to about. But this has been something that young people have really responded to.

We’ve been doing a lot of work on testing messages about what Vivibot is and what it does, to make sure it’s fulfilling an existing need for young people. We’ve done some very in-depth user interviews, and have really tried to deeply understand the different users who’ve come to Vivibot. What’s gotten them there, what they hope to get from the experience, and what they do get from the experience. It’s pretty standard design research work, but we really try to get a deep sense of how we’re fulfilling the need.

One of the ways you’ve done that is by engaging young people to help you refine the voice of the bot, right?

Yes—a positive psychology intervention can be delivered in a lot of ways, but the user experience that we’re trying to design needs to work for this audience. We spent a lot of time working with young people from the very beginning about elements like that, how to make the syntax and the language and the content of the tool feel more like it was a friend communicating with you. The young people we worked with initially wanted the language to be stronger. Stupid Cancer, which is the nonprofit for young people with cancer, says things like “F*ck cancer. Cancer is shitty.” And that’s the way young people want to talk about it. But we had a few healthcare partners who said, “We don’t distribute this if you don’t take the word shitty out of the UX.” So they ended up putting in the emoji that’s a little pile of shit. They got creative about ways to do it.

Ha—that’s exactly the kind of creativity we all respond to, right? You mentioned that the product so far has gotten a strong response. Have you had early insights into how it’s helped young people formulate their post-cancer identity?

Yes—I think the mechanism that helps with that is self-reflection. The bot does a lot of work on getting to “who you really are.” Young people might be 12 or 14 or 15 when they get cancer, and that’s peak identity formation time. Maybe they thought of themselves as a football player or a swimmer or a dancer—our identities at that age often corresponded with the things we did more than who we are. I think a lot of the value of self-reflection is that you get closer to who you are and the qualities you bring to the world—as opposed to the physical things that you used to be able to do that you might not be able to do anymore. Without an opportunity to reflect, you won’t necessarily find those things in yourself. It’s about getting a deeper and broader sense of what your gifts are and what you can bring to the world.

Which is hard enough to do when you’re a teenager and you don’t have cancer.

Exactly. And that’s why I think that this tool, these opportunities for self-reflection, are really valuable. The whole Vivibot project is about delivering a set of evidence-based, positive psychology skills, so it could be useful for people going through many different challenges. We’ve been intrigued by the number of people who have come to chat with Vivibot who are people around the young person with cancer—friends, siblings, family members, even clinicians. It’s tailored and designed to talk about and engage people around the cancer experience...so there might be potential for broader application. Or, at least, for others to learn from the work we’ve done.