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Using data and technology for HIV prevention and treatment

Joseph McGowan and his team at Northwell’s Center for AIDS Research and Treatment is working with mobile apps to encourage patients to take their medications. The team also identified which metro New York areas have the highest incidence of HIV and other sexually transmitted diseases.
Joseph McGowan, MD, and his team have implemented mobile apps and video chats help HIV patients take their medication.

Northwell’s Center for AIDS Research and Treatment is working with mobile apps to encourage patients to take their medications. The team also identified which metro New York areas have the highest incidence of HIV and other sexually transmitted diseases.

While prevention and treatment strategies have helped HIV incidence in New York State drop 43 percent from 2006-2015, clinicians, researchers and administrators agree there is much more work to do. 

Consider that there are nearly 40,000 people infected with the virus each year in the US. And because each person has their own lifestyle, financial means, social status and way of engaging in treatment of the virus, increased ways of communicating with patients are needed. 

Northwell’s Center for AIDS Research and Treatment is executing various strategies to connect and assist these patients to ensure adherence to medications. The team, led by the center’s Medical Director Joseph McGowan, MD, has also developed a new tool for HIV prevention that has mapped out HIV incidence in the metro New York area.

Central to their work is REDCap, web-based software that serves as the team’s clinical and translational research database.

“REDCap is a system that enables us to query, collect and analyze information regarding mental health issues, substance use, housing, etc.,” Dr. McGowan said. “We have hundreds of points of information, characterizing the patients. We’ve linked that to levels of adherence to treatment, adherence to appointments and viral suppression rates. These data demonstrates health care disparities based on various parameters.”

Generating heat maps

The initiative began in November 2015. Answers from 300 psychological and social questions collected twice a year from the center’s patients were entered into REDCap and then combined with data from the New York State Department of Health and Northwell’s Core Lab, to generate heat maps that showed the locations of the highest incidence of HIV and other sexually transmitted diseases.

“Lo and behold, they all highlighted the same areas — areas of high community viral load and high HIV transmission,” Dr. McGowan said. The communities identified were Hempstead, Far Rockaway, St. Albans, Jamaica, Corona, Springfield Gardens, Rosedale and numerous areas in Brooklyn. Seventy-four percent of the unsuppressed patients living in the “hot zones” were black.

“We now know where new HIV diagnoses and sexually transmitted infections are occurring,” Dr. McGowan said. “We know where those who don’t have viral suppression live. We are working with community leaders to determine how to reach those affected. How do we engage them in care and address the barriers to care?”

With a National HIV/AIDS Strategy calling to reduce the number of new diagnoses by at least 25 percent by 2020, Dr. McGowan believes this research can significantly boost HIV prevention, especially in the areas with high incidence. He is presenting this research to the Centers for Disease Control in April.

Medication adherence, on your phone

Other steps are being taken as well. Dr. McGowan’s team also helped develop two mobile applications and a unique video therapy to help HIV patients take their medications. Piloted last year, the center offered an app that allows patients to log when they take anti-viral medication. Submissions are monitored by a clinician, the app also sends reminders to patients when medications are overdue.

After the successful pilot, the app is now being expanded to encompass all medications patients are taking, including those with multiple chronic comorbid conditions such as diabetes, hypertension, liver disease and cognitive issues related to aging. The goal is to enroll 170 patients over two years.

“This is direct,” said Pat Kolakowski, nurse manager at the center. “There are mechanisms in the app that allow patients to get in touch with the research coordinator who can answer any questions. She can go back and forth through the app with the patient.”

quotation mark We know where those who don’t have viral suppression live. We are working with community leaders to determine how to reach those affected. How do we engage them in care and address the barriers to care?
Joseph McGowan, MD

A second app geared toward young men who have sex with men utilizes social media as an intervention. The app allows the patient to interact with a peer educator known as a “peep” and features a comic-strip  serial in which users can follow the next chapter in the story each week. A Netflix writer was hired to create the storyline. Once in the app, users can also log medication times and see important health data.

“It’s a two-way communication between the patient and the peep,” said Richard Varghese, senior administrative manager for the Department of Medicine’s Division of Infectious Diseases. “Patients should engage with the app, which will remind them to take their medications. They can also look at their viral load count and CD4 level.”

Mr. Varghese said enrollment with the app spiked last year and they now have more than a hundred users. He also said the team completed a new video directly-observed therapy trial, where 15 patients received an iPhone to Facetime (video call) with a clinician two or three times each day, ensuring that the patient takes their medication.

“This was with the most challenged patients who couldn’t get viral suppression otherwise,” Dr. McGowan said of the video trial. “It’s akin to what is done for those with tuberculosis, where they actually send health workers to the home or the person has to come in to the clinic to get their medications every day. There is a huge public health issue to support adherence to medications for TB.

“We’ve tried text messaging, but there was no real way of knowing if they took their meds or not. Some of these patients are quite socially isolated. So they welcomed the idea that there would be some human and visual contact. These are patients who you can throw the ‘kitchen sink’ at them and they still can’t get the virus suppressed. We have to be innovative to meet our patients’ needs.”

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