When Matthew Zachary was diagnosed with brain cancer at age 21 and told he had just six months to live, one of the hardest things to cope with was loneliness.
Then a college senior and concert pianist, Zachary had to abandon his plans to go to graduate school and study writing for film and television. It was 1995 and there was very little in the way of online resources.
“My family was amazing, my friends that didn’t abandon me were great, but they all went to grad school and I didn’t, so I was home alone and miserable,” he remembers. “Had I known what I know now, I would have at least asked the hospital if there is anyone else here like me. But you just don’t think to do that, plus you are terrified.”
Zachary survived cancer, but it took him another seven years to meet a person who shared his diagnosis.
“He was 10 years older than me, but he also had it in his twenties,” he says. “It was this incredible ‘aha’ moment to know that I was not the only college student to ever get cancer in the history of ever.”
Inspired by his experiences, Zachary founded Stupid Cancer in 2007. Now the non-profit organization is developing an app that will anonymously connect users with other cancer patients and survivors. Currently raising funds on Indiegogo, Instapeer will be open to everyone, but it is designed with the needs of teenage oncology patients in mind.
Zachary hopes that it will give other young cancer patients the same ‘aha’ moment he had when he met his friend.
“We’re such a small percentage of people who get cancer every year. So in meeting that guy, it opened up a whole new world for me and by that time I had rebuilt a whole new career for myself,” says Zachary, who worked in the advertising industry before starting Stupid Cancer.
“By meeting him, I met dozens of other people, and this whole world opened up that I didn’t know existed.”
Safe And Anonymous Peer Support
Zachary hopes that Instapeer will give young cancer patients a safe place to discuss issues they might not want to talk about even with their family and friends.
“I was impotent for two years after my treatment. I’d been infertile since day one, but I was impotent from treatments for two years and I never had anyone I felt comfortable telling this to until I met Craig. He said he went through the same thing and it totally sucked, and we commiserated on this incredibly intimate little thing that I felt so embarrassed to tell anyone else but him,” he says.
While young cancer patients currently have online forums and chatrooms to turn to, Zachary says those resources have limitations, especially for people dealing with new diagnoses.
“What I found for me personally, and what I’ve seen reciprocated with other people’s opinions, is that online forums are very intimidating. I mean, extremely intimidating,” he says. “It becomes a pissing contest for who has suffered more, and you can quote me on that. No one will disagree with me.”
“Can you imagine being a new patient seeking peer support and going into a forum where people are arguing over death, dying, who’s worse off, and I’m better than you?” he adds.
Many teenagers are also reluctant to call hotlines.
“Teens will not pick up a phone and call a hotline and ask to speak to a stranger and tell a stranger their story, then have a stranger tell them, here’s another stranger to talk to, talk to the stranger,” says Zachary.
How Instapeer Works
He hopes Instapeer, which is HIPAA-compliant, will offer a higher level of “privacy, anonymity, confidential relationships, and trust.”
Users who are matched with each other through Instapeer’s algorithm will see very little personal information about the other person, just a first name and last initial; their cancer diagnosis and what stage it is at; their city; a tagline; and recommendations from other users.
“I think the fact that there will be no avatars, no profile pictures, no screen names, is critical to that safety that people need. I’ve meet so many people that are wallflowers,” Zachary says.
“Cancer is still stigmatized and not everyone wears it on their sleeve like in the movies and TV shows all about it now. Not everyone is like that. There are still plenty of wallflowers that are scared, ashamed, and all the testing and survey groups I’ve done over the past three and a half years have shown that if you give someone the opportunity to feel safe, they will take advantage of that opportunity.”
The app is being designed specifically for teenagers “because in the world of cancer, teens are the most underserved in terms of peer connections and their access to age-appropriate resources and care.”
Lauren Scott, Stupid Cancer’s national spokesperson, was pivotal in helping Zachary understand what it feels like to be a teenage cancer patient before she passed away last year.
“She told me teenagers today don’t even make eye contact. They stare at their phones all the time and they text everything to each other. They use Snapchat and Instagram their life. If we are going to give them a support tool, it has to be SMS, it can’t be chatrooms. It has to be a very specific interaction with someone like them,” he says.
The app’s first group of users will be drawn from Stupid Cancer’s network. The organization currently works with six major oncology societies and associations, 18,000 cancer centers, and serves as a partner for about 140 other non-profit organizations.
Instapeer’s challenge is not building a community, but “scaling up once we open our doors,” says Zachary.
Stupid Cancer is collaborating with RapidValue, a mobile development team that has worked with eBay and Facebook, on Instapeer. One of the app’s advisors is former eBay director of product David Beach, who is also a stage four lung cancer survivor and member of Stupid Cancer.
Once Instapeer reaches the beta stage, it will be invite-only, including people who have donated money through the Indiegogo campaign. Then over the next six months, the app hopes to raise enough capital to scale up and launch a public app in the App Store by January.
One of the things Zachary wants to focus on as the app grows is making sure there is scientific evidence that Instapeer’s model helps improve quality of life and well-being for young cancer patients instead of just focusing on user adoption.
“We have a brand that is one of the most highly respected in the world of oncology at this point and we have a very delicate balance and line to tread in order to retain that reputation,” he says.
Instapeer will work with an advisory board that includes clinical psychologists, psychotherapists, licensed social workers, and oncology nurses.
“We’re trying to really cover as many bases as possible to make sure the app is not just cool and cool-sounding and innovative, and whatever other buzzwords there are in the industry, but also meaningfully valuable to the medical establishment, and that’s important.”
For more information about Instapeer, check out its Indiegogo campaign.