Northeast Ohio researchers are taking a look at the impact of a locally developed app for young people living with HIV. The Positive Peers app promotes holistic care, medical guidance, and a sense of community for the particularly vulnerable group.
“At first, it was terrifying,” said James Elder about when he discovered he was HIV positive during a screening in June. “Then after my eight hours of crying, I collected my breath and just realized, ‘Hey, you have family friends and family members who have HIV and it’s not a death sentence anymore.’”
It may feel like an isolating diagnosis to some, but the 29-year-old is far from alone. In 2021, more than 32,000 people were found to be HIV positive. More than 65% of those were between the ages of 13-34.
“They're new to chronic illness. They tend not to have a lot of experience,” said Dr. Mary Step. “This is a group that really does have special needs and we want to be there to help them learn how to do these things.”
Step, an associate professor of social and behavioral sciences at Kent State University, is one of the co-leaders of a research project studying the impact of the Positive Peers app.
The app is intended for young people living with HIV. It was inspired by MetroHealth patients in an HIV support group. A social worker there helped the group create a private Facebook page to network and discuss their similar experiences. She saw the benefits of the social circle and endeavored to make it a more accessible and comprehensive facet of HIV care.
Step and a principal investigator at MetroHealth became involved in the project in 2015 when the HIV/AIDS Bureau at the U.S. Health Resources and Services Administration (HRSA) provided funding to develop digital media tools.
The Positive Peers app was developed with a Northeast Ohio company with the goal of people living with HIV being more involved in their health care, feeling less isolated, and better prepared to live life with the virus.
“The app is built on the premise of mind, body, spirit,” Step said.
The private mobile resource features a community forum, blog posts with health and social guidance, medication reminders, and a variety of resources.
“You get a different perspective on how your life can actually be,” said Elder.
He was introduced to Positive Peers by a mental health counselor at a sexual health and wellness center in Nashville shortly after his diagnosis. He said the medication reminders and resources tab have been especially helpful.
“After my diagnosis, things fell kind of apart with my relationship with my partner. And there for a moment, I was in a pretty bad housing crisis situation,” Elder said. “So I was able to use the resources tab to get in contact with my local case manager for housing resources and things like that and was able to find a temporary solution for myself."
Updates and adjustments to the app are regularly informed by a Community Advisory Board comprised of young people living with HIV.
Elder is the first user turned administrator for Positive Peers. He helps facilitate a network of people living with HIV in his home state of Tennessee. Aside from the community he’s seen the app create, it has also been credited with improved medical outcomes.
Step explained a pilot study found app users were three times as likely as HIV patients who do not use the app to be consistently engaged in their medical care. The sample group was also four times more likely to be virally suppressed, which decreases their chances of transmitting the virus.
“That is a pretty good outcome,” Step said. “We want to see people get connected to care, stay in care, and follow the directions for being undetectable.”
The research team recently secured a major grant to assess the impact of the app on a wider scale. $5.7 million from the National Institutes of Health (NIH) will measure outcomes through a clinical trial at six sites across the country and allow the app to organically grow its users through targeted social media ads.
Elder said the resources and community provided by the app have also been a way to inspire hope for people living with HIV.
“They think it’s going to be the end of their life or the end of all their happiness in life. And that just simply isn’t the case anymore,” he said.
Since it scaled up nationally, the app has more than doubled its users and reached at least 32 different states. You can learn more about the Positive Peers app and find HIV-related resources by clicking on this link.
