Ohio State providing research, data collection for cervical cancer nonprofit
In Nicaragua, cervical cancer is a leading cause of death for young women in rural communities.
The Lily Project, a nonprofit organization founded in 2015 by Nicaraguan Anielka Medina to honor her mother’s passing from the disease, aims to decrease cervical cancer rates and improve women’s sexual health in rural areas through mobile screening, treatment and health education.
With no publicly-available vaccine for HPV — the main cause of cervical cancer — The Lily Project has been essential in reducing cervical cancer incidence and deaths. The organization has achieved rapid success, working with the Nicaraguan government and screening more than 20,000 women since its founding.
And in the last few years, they’ve had some help from Ohio State.
Kammi Schmeer, associate professor in the Department of Sociology, began collaborating with The Lily Project in 2017. Already working on health research projects in Nicaragua since the early 2010s, Schmeer was quite familiar with the country when then-medical student Erika Reese came to her looking for a research opportunity. Together, they discovered The Lily Project online, met with the organization’s leadership in Chicago and traveled to Nicaragua to see its work in person.
Schmeer remembers being impressed with The Lily Project’s efforts from multiple levels: its ability to empower local women, its respect and kindness for patients and its attention to the problems Nicaraguan women face that go beyond cervical cancer.
“They’re very culturally attuned to these women,” Schmeer said. “Over time, that’s really increased their understanding of not just the medical care that needs to be provided but really the lives that these women are leading and the barriers they are facing in meeting their health care needs.”
But while The Lily Project was making strides providing health care, it was lacking in research capabilities and data collection. That’s where Schmeer and Ohio State came in.
“They’ve been so focused on service provision that they haven’t had the time or resources to use the extensive data they have collected over the years,” Schmeer said.
With oversight and guidance from Ohio State, The Lily Project now has an electronic data collection process, which includes acquiring consent from women to use their data in research. Information collected includes reproductive health history, marital status, number of sexual partners, number of children and lab results.
Combining the survey data with test results, Schmeer’s group can help identify issues that may predict the risk of infections and other abnormal Pap smear results. The Lily Project can use these findings to better address the social and cultural determinants of women’s sexual health in locations where women have not historically received the health care they need.
In 2018, Laura Frizzell, a PhD student in sociology, started helping with data collection and analysis. Currently working on data storage and processing solutions, she took on her role with the Lily Project in addition to her PhD work in crime and criminal legal systems.
Thanks to Ohio State, The Lily Project also now has quick access to digital records from previous visits, making follow-ups with women easier. In the past, workers would have to comb through years of paper records any time a patient would have a second visit.
“What would take them hours and hours and hours to do by hand would take away from the time that they’re able to spend with the women,” Frizzell said. “Our goal is having them spend every day in the field and not waste time entering data by hand. I think we’ve made a ton of progress toward that, and that’s going to make a huge difference in the number of women they’re able to offer their services to.”
It’s not just sociology that’s helping the cause. Ohio State’s collaboration with The Lily Project has turned into a true interdisciplinary venture featuring professors from the College of Nursing and receiving critical funding from the Office of International Affairs (OIA). With multiple perspectives and units working together, Ohio State is able to broaden its outreach to The Lily Project.
Just last month, Schmeer’s interdisciplinary group was recognized by the Office of International Affairs for the work it has done so far. It was awarded OIA’s 2020 Emerging International Engagement Award, given annually to faculty and staff who have demonstrated outstanding promise in international outreach that has the potential for long-term impact.
With that long-term impact in mind, The Lily Project now hopes to continue expanding geographically and technologically. The group wants to implement its successful model in other areas of Nicaragua. It wants to expand from focusing on cervical cancer to addressing the holistic health of its patients. And in light of the coronavirus pandemic, it wants to expand from purely in-person visits to digital checkups using video and text-based services like WhatsApp.
Schmeer hopes to be there every step of the way.
“This is a part of my life and work that has become really meaningful,” Schmeer said. “It was wonderful to be recognized and know that Ohio State values these kinds of partnerships, extending beyond Columbus and Ohio.”
Medina, The Lily Project’s founder, sees things the same way.
“Our partnership with Kammi and her team at Ohio State is opening up opportunities for The Lily Project we could only dream about,” Medina said. “We are grateful they care about the work we do and are willing to share their time and talent with us. They are making a difference in the lives of women in Nicaragua.”