University of Virginia Ryan White Clinic
Social media. Smartphone apps. Online message boards. No longer are they just tools that we use to share cat videos, sell an old dining room set or take “selfies.” They have become sophisticated mechanisms that we can use to truly improve our lives, like share big transformational ideas, increase awareness of important issues, or raise funds for life-improving causes. We can even manage our health care.
For many people living with HIV in our country, getting the health care they need isn’t always easy. And even once they get into care, staying in that care can present its own set of barriers and challenges. For one grantee of AIDS United’s Retention in Care initiative, supported by the MAC AIDS Fund, that’s where some of our latest technology can help!
Just a two-hour drive from Washington D.C., the University of Virginia Ryan White Clinic serves patients from many parts of the state, as well as from the neighboring states of North Carolina and West Virginia. Patients of the clinic, which is ensconced in the Blue Ridge Mountains, often have to negotiate barriers to their care that are regrettably common to rural communities, including distance, isolation, poverty, and stigma. The result of those barriers? Twenty percent no-show rates to appointments. More than 100 days between a first clinic visit and starting life-saving care and treatment.
“We have found that many of the patients in our area, particularly young patients, never make it into care after testing positive for HIV, or do so after a significant delay, said Dr. Rebecca Dillingham, Positive Links Principal Investigator and a provider at the UVa Ryan White Clinic. “We had to get creative.”
So the UVa Ryan White Clinic developed The Positive Links Project with George Reynolds, President & CEO of Health Decision Technologies, to help overcome some of these barriers to staying in HIV care that their patients face. The heart of the Positive Links Program is an easy-to-use smartphone app that includes:
- a Facebook-like homepage
- a dashboard that shows answers to daily medication, mood, and stress queries
- medication and appointment reminders
- a goal tracking feature
- resources area that features videos
- a contacts section for providers at the clinic; and
- a Community Message Board that enables participants to anonymously connect with one another and ask questions of the Positive Links Team.
The elements of the smartphone app are enhanced and strengthened by other in-person components, including “check-in” meetings with the Positive Link Project team members, and referrals to intensive counseling opportunities for issues like depression or intimate partner conflict.
To promote the app to those who would most use it, Positive Links Coordinator, Colleen Laurence, said that the Positive Links Project team has developed collaborations with the UVa Ryan White Clinic Client Advisory Board, area AIDS Service Organizations, community organizations, and local filmmakers to develop videos to support people who are newly-diagnosed with HIV.
Laurence said that the project has seen success in helping its participants stay connected to their care.
“The different elements of our program -- the Positive Links app, the “Welcome to the Clinic” videos, and counseling opportunities – work in concert to facilitate better linkage to care and strengthen support for people reaching out for help from geographic and socially isolated areas,” she said.
Participants in the program are also pleased with how the project is working for them.
“Each and every one of us who uses this app is making a difference in the future of someone else’s life, battling every day of this new journey,” said one of the participants. “…we all are making a difference together one day, one app, and click at a time.”
The Positive Links team is excited about the future of the Positive Links Project.
“We are confident that, with our Positive Links team and thoughtful, engaged participants, we have a program that is at once intimate –allowing people to connect across seemingly large gulfs in experience – and edgy and independent, enabling them to take ownership in their HIV care and general health and well-being,” Laurence said.