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Giving HIV Patients Ownership Over Care

December 26, 2016

Robert Garofalo, MD, MPH, director of the Center for Gender, Sexuality, and HIV Prevention in Chicago, helped develop a daily text messaging platform that improved adherence to antiretroviral therapies among HIV-positive patients aged 16 to 29 years. The patients received personalized text messages timed to coincide with their daily medication schedules, followed by a message asking if they took their pills. High levels of adherence are needed to maintain viral suppression and avoid antiretroviral resistance, but HIV patients are often on complex dosing regimens and suffer therapy-related side effects that can make it difficult to take prescribed therapies as directed.


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Dr. Garofalo said text message reminders give patients ownership in their care and builds their motivation to take needed medications. He recently shared his thoughts on one of the biggest barriers to optimizing treatment in youths living with HIV and why text message reminders for patient of all ages should be implemented in healthcare settings across the United States.

Why is it difficult for HIV patients to take prescribed therapies as directed?

Forgetting to take daily doses can be the biggest source of poor medication adherence, especially for younger patients. People lead busy if not chaotic lives, so adhering to medication regimens — whether they’re simple or complex — can be difficult. The underlying cause of poor adherence often isn’t about a lack of motivation or a lack of understanding that antiretroviral therapy is important. Patients simply forget. That’s also true of other chronic medical conditions.

What sparked your interest in using text messages to reach patients?

I care for adolescents with HIV and saw how ubiquitous text messaging was among the population. We thought using daily text message reminders would capitalize on how young people already communicate. Text messaging is also cheap, easily accessible and easy to use. Our study’s use of texts makes it fundamentally different than previous research, which alerted patients with beepers or alarms. Text messaging is very much engrained in our cultural dynamic, so the young patients in the study easily accepted it. But there was no developmental component to the intervention. Text messaging is a very straightforward way to reach patients of all ages and it’s not difficult to deploy on a wide-scale basis. This type of platform could, and maybe should, be implemented in healthcare settings across the United States.

Why did you allow patients to personalize the messages they received?

HIV is a stigmatizing disease, so maintaining privacy was the primary motivating factor. Most people wouldn’t want “Remember to take your HIV meds” texts to pop up on their phones, so each patient selected messages they felt would resonate with them. Some kept it really simple, while others made it more motivational in construct — examples included “Mission accomplished?” and “Will you choose life?” The platform included a positive and negative feedback loop, so patients would receive randomized affirmative text messages if they reported taking their medications or motivational reminders to take the next dose if they didn’t respond. Almost all of the study’s participants reported being annoyed by the texts after 6 months, but wanted them to continue, because they found the reminders very helpful.

Do you plan on rolling this platform out in the real-world setting?

Yes, without question. There are already text messaging reminder systems online, but they don’t often include positive feedback prompts, which are relatively easy to implement. I’d like future platform designs to send alerts to case managers or clinicians if patients don’t respond for 3 or 4 days. This intervention holds a lot of promise — it’s a cost-efficient, low-intensity intervention that had strong behavioral effects — and we’d like to see it rolled out in HIV clinics across the country. But is that possible? It’s one thing to show results in a research study, and another thing altogether to provide usefulness in a real-world setting.

What barriers would need to be overcome for that to happen?

There are implementation questions that need to be answered. Would it be best to launch the platform through a free-standing website that patients sign up to use? Should it be done through physician offices or departments of public health? We need to determine how something that clearly improves adherence among HIV patients to be rolled out nationwide. A freestanding app will help motivated patients who take the time to sign up, but it probably won’t help the patients who need daily reminders the most. It might be best and most efficient to have physicians, nurses, or case workers talk to patients about the text messaging option and walk them through the sign-up process.


A Randomized Controlled Trial of Personalized Text Message Reminders to Promote Medication Adherence Among HIV-Positive Adolescents and Young Adults Aids and Behavior

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