After professor Hee Lee lost several people close to her to cancer, she felt compelled to change her research focus in social work, from family violence to cancer prevention. She recognized that cultural attitudes were acting as a barrier to screening that can catch cancer early, in time to save lives.
“I started going for routine cancer screening after my husband died,” says Lee, “but, because I am Korean, I still believe that if I do not feel symptoms or pain, I am totally healthy and do not need to go to a clinic, even for prevention.”
Lee also recognized that technology might be put to work in her effort. When she heard about Education Technology Innovations, a new tech development unit in CEHD, she made a call. That started her on the road to a promising collaboration.
Expanding the reach
When Lee wrote a grant application, she built ETI into her proposal. With funding from the Centers for Disease Control and Prevention (CDC), she is now investigating the effectiveness of a mobile-responsive application-based intervention that aims to increase human papilloma virus (HPV) vaccination rates among Hmong young people. And ETI’s team is playing a role.
“The Hmong population has high cervical cancer rates,” says Lee. Yet the HPV vaccine, which requires a series of shots, is highly effective in its prevention.
Reaching young people—and their parents—around a topic that involves disease prevention as well as sexuality would be complex. Add the cultural dimension and limited English proficiency of many parents and the challenge was daunting.
John Behr is the chief technology officer for ETI. He met with Lee and assembled the team to start developing the technology to support her research. That required a lot of collaboration along with education on all sides of the table and eliciting feedback from everyone involved in the project.
“A huge part of our mission is developing these technologies that expand the reach of the work,” says Behr. “We needed to learn not just about the research but about the people who will be in the study for it to be successful.”
Design proved to be a major factor in the work. ETI designer Viet Do started researching options and cultural context.
“At the beginning I knew nothing about it,” says Do. “For example, with color—after we showed some early designs of the application to people like those who would be in the study, that helped us refine the color palette.”
The resulting interface is distinctive in colors and icons that connect strongly to traditional Hmong art. Even the acronym HPV took on another meaning: Hmong promoting vaccines. A frequently-asked-questions page was created to address questions simply and directly.
The ETI team also built a quiz model as a tool to increase knowledge about HPV and the vaccine.
“It’s not a phone app but a mobile-responsive app,” Behr says. “That means desktop, mobile devices, tablet. Especially with HPV, that’s important, because a lot of kids live only on their phone, but the parents don’t!”
At the same time, ETI built tools within the application so the researchers can easily access and analyze their data.
The pilot study is now in progress and will be wrapping up this fall. Lee and her team will analyze the results with the small sample and, based on the results, identify next steps. But they are already talking about writing a grant to support a larger study based on what they’ve learned.
This is just one of Lee’s research projects related to cancer health disparities among underserved minority populations. Last year she accepted a position as associate dean for research and an endowed chair on the faculty in social work at the University of Alabama. She continues to work with ETI and the research team in Minnesota, and she’s been spreading the word about ETI to colleagues.
An ecosystem of solutions
Associate professor of medicine Anne Blaes, MD, heard about ETI from Hee Lee. Now Blaes is working with ETI on a research project to help cancer survivors live longer, with Lee as a co-investigator.
Blaes has a special interest in cancer survivorship, the late effects of cancer therapy, and medical education. With cure rates approaching 90 percent, many Hodgkin lymphoma survivors are living for decades following their cancer treatment, says Blaes. That is exciting news, but they are at a greater risk of dying from second cancers and cardiovascular disease than recurrence of lymphoma, and many don’t know it.
“Sixty-five percent of Hodgkin survivors do not know they are at risk for secondary cancers, and 45 percent do not know they have an increased risk of cardiovascular disease,” Blaes says. She is leading a team to perform a randomized controlled clinical trial, enrolling 40 Hodgkin lymphoma survivors treated between 1988 and 2009 in Minnesota to find out whether a novel method of delivering survivorship information using mobile technology, called MAPS, is effective in improving their knowledge about cardiovascular disease and breast cancer.
“Given that most cancer survivors use technology and mobile platforms to learn about cancer and health, we are excited to launch our study and determine how effective it is,” says Blaes.
Blaes worked with the ETI team to build MAPS. It has a wholly different look and feel than Lee’s HPV app, yet the team was able to apply a lot of the knowledge they’d already gained. For example, the quiz model they created for the HPV app could be adapted for MAPS.
“It has taken a little while for those of us as clinicians and researchers, not in technology, to understand all the pieces of work that are necessary in building an electronic platform,” Blaes says.
She says it’s required patience and communication from both teams. Her team has needed to communicate what patients want to see, and how they need to be able to access pieces such as lists of resources, where they can get cancer screening or access to a cancer survivorship clinic.
“They have been easy to work with,” says Blaes. “I would strongly encourage anyone who is interested in using technology and mobile platforms as part of a study to consider John and his team.”
As for ETI, the whole team is energized by the mission and its ripple effect across lives.
“We’re building this ecosystem of solutions,” says Behr. “We’re able to build great apps that have a profound impact on people’s lives and increase their reach in ways they normally wouldn’t have.”
Story by Gayla Marty | Images courtesy of ETI | Fall 2019
Part of this story was published previously in a profile by Joel Grostephen for the School of Social Work.