For most of her young life, 17-year-old Tamara Terraza has felt that her opinion hasn’t truly mattered.
"I’ve always felt like an outsider when it came to my opinion or views on things," says the recent Skyline High School grad. "Others would look at me, thinking I wouldn’t be able to understand or relate to anything. But actually, I did and I do."
Given that experience, Terraza was intrigued when one of her teachers told her about the possibility of doing her 2018 summer internship with a program called MyVoice.
Run by the University of Michigan Health System, MyVoice is a groundbreaking program that uses weekly, text message-based polls to collect real-time responses from over 1,800 youth aged 14 to 24 across the United States. Participants, called MyVoicers, are paid $1 a week to sound off on three to five open-ended questions related to a specific topic. MyVoice uses the resulting responses to create research reports that have been used by policymakers at the local and national level.
Terraza hadn’t even known that such a program existed and she saw the potential it had to make a difference in the lives of young people like herself.
"A lot of us don’t realize how important our voices are until it's too late. I was impressed that MyVoice would be getting our opinions in front of people who are making decisions," she says.
Shortly after filling out an application, Terraza was thrilled when she was accepted as a summer intern. She joined the MyVoice team, which consists of physicians, health researchers, social scientists, computer scientists, and designers.
Dr. Tammy Chang founded MyVoice in 2016. As a family physician, Chang can sympathize with Terraza’s experience and understands that many youth have felt the same.
"Youth have what we consider an invisible identity," says Chang. "They’re experiencing so many things that may be difficult to articulate, there are things they may not want to articulate with someone personally, and there are things no one ever asks them to articulate."
Chang and her colleagues knew that getting young people to open up would be a challenge. But it was a necessary first step in getting youth needs in front of policymakers. Furthermore, they recognized that to truly impact policy, young people's input needed to be collected, analyzed, and shared in a timely manner. It didn’t take them long to recognize that they could use existing, youth-friendly technology to impact policy.
"Often research takes a long time to collect and by the time it is looked at, sometimes years later, the research is already outdated because the needs of youth have already changed," Chang says. "For us, it was not okay. We knew that research could do better and we knew that we could take the technology that is popular with a lot of young people and get data from them in real time."
Thus far, Chang has had no problems bringing young people on board. MyVoicers are recruited in a variety of ways, such as social media announcements and community outreach events.
"They represent a diverse sample. There’s not just college-educated kids involved," Chang says. "We’ve got 30% or more kids who qualify for free or reduced-cost lunch. We have people who are from small, rural towns. 6% are non-binary gender."
One thing that Chang has noticed across the board is just how forthcoming and dedicated MyVoicers are. While she attributes this openness partly to the texting modality, anonymity, and financial compensation, she says MyVoicers express gratitude for having a platform where they can be heard.
"They pour their hearts out," Chang says. "We asked once about climate change and they talked about how it affected their lives, their diseases, their asthma, how it has affected their family members, their crops, or their air quality. The stories are often really moving."
Chang feels the open-ended nature of the survey questions is refreshing and unique to MyVoicers and prompts them to participate in a deep way. Using the topic of sex as an example, she explains that there are numerous surveys that ask if a person is having sex, how often, and with how many people. A MyVoice survey would ask different types of questions such as "Why are young people are having sex?" and "What are the reasons for having sex?" MyVoice collects the hows, the whys, and the narratives around issues.
"What we try to do is give context to the numbers. The numbers are collected by other polls and read by other people. But it is the context that policymakers really need if we are truly going to make a difference in the health of young people," Chang says.
The difference that Chang speaks of is already starting to become evident. MyVoice recently partnered with the National Academy of Medicine (NAM) to develop a national report on adolescent development. Closer to home in Washtenaw County, MyVoice has been collaborating with Washtenaw County Community Mental Health (WCCMH) to address mental health issues.
Lisa Gentz, WCCMH program administrator for millage initiatives, recalls being very intrigued when she first heard about how MyVoice could help increase the effectiveness of the county’s mental health and public safety millage.
"One of the investment areas identified in the millage investment plan is a county-wide anti-stigma campaign which is being focused on youth for the first two years," Gentz says. "The data from the MyVoice project is really helping us hone how we implement the campaign."
Another benefit of the partnership is that WCCMH has access to youth who it might not have been able to reach through traditional focus group methods.
"We have been able to hear from more voices," Gentz says. "There are youth who want to remain anonymous, who don’t have access to transportation to get to a focus group, or who have other barriers to get to us. But MyVoice can connect us to them."
According to Chang, bringing hundreds of Washtenaw County young people's voices to the table helps WCCMH confirm that it's investing in programs that local youth actually want.
Chang says she's concerned that decisions are too often made by people who haven’t even talked to youth. She says there's a gap in understanding what young people need and what they are actually experiencing in the moment.
"That is where MyVoice comes in," she says. "We give decision-makers a look at that invisible identity. And that’s a game-changer, not just for youth, but for everyone."
Jaishree Drepaul-Bruder is a freelance writer and editor currently based in Ann Arbor. She can be reached at jaishreeedit@gmail.com.
All photos by Doug Coombe.