Too often, when Nadia Dowshen, MD, is in a patient exam room explaining to a teen living with HIV how antiretroviral therapy can keep the virus from destroying his immune system, he is looking at his cell phone and not fully paying attention. Could a random text message truly be more important than her lifesaving message? It was during one of these distracted clinical encounters that a novel pop-up message went off in her head.
“I thought, if they’re on these phones all the time, then we need to figure out how to use them, along with texting and social media, in order to help them improve their health,” said Dr. Dowshen, a pediatrician and adolescent medicine specialist who serves as director of Adolescent HIV Services in the Craig-Dalsimer Division of Adolescent Medicine at The Children’s Hospital of Philadelphia. She also is a faculty member at PolicyLab at CHOP and an assistant professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania.
A major advantage of using mobile health (mHealth) technologies to engage HIV positive youth, Dr. Dowshen said, is it that healthcare providers can deliver interventions in the real times and places where they need support as they go about their daily lives. mHealth approaches also can help to overcome some of the isolation and stigma often experienced by HIV positive youth.
In Philadelphia, about 2,000 people under age 30 are living with HIV, and they make up the highest percentage of those newly diagnosed; however, only one-third to one-half are as likely to be linked and retained in care as adults living with HIV. Also among youth, outcomes across the HIV care continuum — the series of steps from HIV diagnosis, to being engaged with medical care, to achieving effective virus suppression by consistently using HIV medications — are significantly worse than they are for adults.
Dr. Dowshen helped to launch an innovative research collaboration with CHOP’s Adolescent HIV Initiative and Philadelphia FIGHT Community Health Centers with support from the Health Resources and Services Administration to implement a comprehensive social media intervention to reach youth under 30 across the HIV care continuum in the city. Philadelphia FIGHT provides HIV primary care to low income members of the community, along with research, consumer education, advocacy, social services, and outreach to people living with HIV and those who are at high risk.
“We see these mHealth interventions as an extension of our clinics and staff who support these youth and establish strong relationships with them over time,” Dr. Dowshen said.
Dr. Dowshen is a co-principal investigator of the project, called Positively Connected for Health (PC4H), along with Helen Koenig, MD, MPH, an infectious diseases specialist who provides HIV specialty and primary care at the Jonathan Lax Treatment Center of Philadelphia FIGHT and a clinical assistant professor in the division of Infectious Diseases at the Hospital of the University of Pennsylvania. With their combined expertise, they aim to demonstrate that PC4H will be successful at helping youth to know their HIV status, assisting HIV-positive youth to gain access to care, and ultimately improving their health outcomes by increasing their adherence to therapy and reducing their viral load.
Under the PC4H umbrella, the research team will offer a series of three distinct yet integrated approaches developed by CHOP and FIGHT: the iknowUshould2 platform, the Treat YourSelf mobile application (app), and APPlify Your Health.
The Adolescent HIV Initiative produced this web-based social media platform about two years ago with CHOP’s public relations and marketing department to encourage youth to participate in testing for sexually transmitted infections (STI) and to know their HIV status. The design of the website and corresponding social media campaign was based on input from youth in the community and focuses on dispelling myths or fears youth may have about getting tested. The website was formatted for phone and tablet users, with Facebook, Twitter, Instagram, and YouTube all made accessible through the website homepage.
Currently, www.iknowushould2.com includes pages on ‘‘What R STDs?,’’ ‘‘STD Testing is Easy,’’ ‘‘Y Care about STDs?,’’ ‘‘Who Should UTalk To?,’’ and a page “Where To Get Tested’’ with a locator to identify free, confidential HIV and STI testing based on zip code in the Philadelphia area. The research team plans to update the iknowUshould2 platform, including adding more information about pre-exposure prophylaxis, which is another important HIV prevention modality to go along with HIV testing.
Treat YourSelf Mobile Application
Dr. Dowshen also relied on insights from her HIV-positive patients as she created this new mobile app with the goal of increasing adherence to HIV therapy, increasing retention in care, and reducing viral load. The app includes personalized, tailored time and location-based support.
“One of the things I noticed would happen often is youth would come in for a visit and say, ‘Everything was going great with my medicine, until two months ago when I lost my housing, or I started having issues with substance abuse.’ And I would ask, ‘Why didn’t you call me?’ This app will allow us to identify problems with adherence in real time so that we can intervene with personal support when it’s needed most,” Dr. Dowshen said.
For example, the app has an algorithm to detect when a youth has not indicated for several days in a row that he has taken his medication. The youth will receive a text message saying, “Hey, what’s going on? Do you want to call your support person or healthcare provider?” If a few more days go by and the youth still has not responded, the app has a feature that when enabled will automatically notify the youth’s support person and healthcare provider so that they can reach out to him and get things back on track.
“It is based on a theory of supportive accountability, which is the idea that these technological interventions are only as good as the person behind them that you trust and are accountable to,” Dr. Dowshen said.
Another integral part of the app is that all youth who are using the app are connected to each other anonymously, and it gives them the opportunity to create a network of social support. Unfortunately, due to the stigma surrounding HIV, many youth who are living with the disease are not comfortable disclosing their concerns to others or coming to group support type interventions. The app allows users to choose an avatar and try different gaming functions, such as joining teams who can earn points for good adherence and other positive behaviors. In addition to some healthy competition, the app offers a chat function to send encouraging messages to each other.
APPlify Your Health
Philadelphia FIGHT developed this digital health literacy intervention which uses mobile pop-up labs that provide youth-centric small group workshops and sample mobile devices to introduce the iknowUshould2 platform and the Treat YourSelf app, and to ensure that these tools are used effectively. A series of workshops will focus on HIV-negative or status unknown youth. An instructor will show participants how to join the iknowUshould2 campaign, explore the reliable online HIV testing tools it features, and then invite them to participate in rapid HIV testing at the end of the session.
Anyone who tests positive will be linked to resources at CHOP and FIGHT and encouraged to attend another APPlify Your Health workshop that focuses on using the Treat YourSelf app, customizing the app for their preferences, and discussing other key concepts of digital health literacy. Through the APPlify Your Health workshops, the research team aims to enroll 125 high-risk HIV status unknown youth into the iknowUshould2 campaign intervention and 125 HIV-positive youth into the Treat YourSelf app intervention.
Meeting Young People Where They’re At
At the end of the four-year project period, Dr. Dowshen and the research team expect to determine the feasibility, acceptability, and efficacy of iknowUshould2, Treat YourSelf, and APPlify your Health. If successful, they hope that these three coordinated social media methods could be replicated and implemented as an intervention on a larger scale to support youth throughout the U.S. who are at risk for HIV or living with HIV. It would be a new paradigm to keep up with “mobile” teens and guide them at key times along the HIV care continuum.
“You’re actually carrying on an intervention every day at every moment,” Dr. Dowshen said. “At CHOP’s Adolescent HIV Initiative, we have a wonderful multidisciplinary team who all work together to help youth achieve their goals across the HIV care continuum, but the clinic’s hours may not be when our patients need us the most. mHealth allows us to intervene in real time and get them real human contact with a provider who they trust.”
Dr. Dowshen is also co-chair of a new mHealth Research Affinity Group launched within CHOP’s Research Institute. Read more about how it provides a forum for researchers to meet and collaborate about new ways to explore the ever-expanding array of technologies being used for mHealth.