How Haiti Is Using Digital Data to Keep HIV Patients in Care
For over a year now, James Rouzeau has been one of four "agents de terrain," or community health workers, supporting patients accessing HIV services at Hôpital Bernard Mevs in Port-au-Prince, Haiti. He is new to the healthcare field -- his background is in computer science -- but he has a newfound passion for his work. As a community health worker, Rouzeau counsels patients about their health, and provides support to people "who are often marginalized, who feel like they cannot talk about their diagnosis, who feel like there is no one in their corner."
One of Rouzeau's responsibilities as a community health worker is to follow up with patients who have, for one reason or another, stopped coming to Hôpital Bernard Mevs to receive HIV care. There are many reasons a person living with HIV may stop seeking care in Haiti: perhaps transportation costs are too high, or it is not possible to take time off work, or patients fear being recognized by neighbors. But if patients do not regularly take their HIV medications or stop medications outright, their treatment regimen may stop being effective, leading to serious illness. In addition, if patients do not adhere to daily treatment schedules, the amount of HIV in their blood can dramatically increase, making it more likely for them to transmit the virus to others. It is critical for both the individual and the community that people living with HIV are afforded every opportunity to regularly receive life-saving care and medications.
This is why community health workers like Rouzeau are so committed to finding and reengaging those who have stopped coming to Hôpital Bernard Mevs for HIV care. One of the most effective ways to find patients who have dropped out of care is by using the information that the patients have shared with their health care providers on previous visits: their address, phone number, and other information from their medical charts. But as much of this information is paper-based in Haiti, it has not always been easy to use this information to follow up with patients.
That changed about a year ago, when Rouzeau began using a handheld computer tablet that allows him to confidentially and directly access this patient information. Rouzeau is now better equipped to seek out those patients who have dropped out of care, through phone calls, text messages, and visits to their homes. And when he does find those patients, he works with them to understand why they have stopped seeking medical care and to help them return to the hospital and continue their treatment. During these follow-up visits, Rouzeau uses his tablet to securely record and manage the information that he collects, allowing for subsequent monitoring of these patients and their health outcomes.
Rouzeau is one of the nearly 200 "agents de terrain" working across 44 HIV care facilities that are using tablets to track and monitor their efforts to link patients to HIV care in Port-au-Prince. This effort is part of the "Suivi Communautaire Projet," or Community Follow-up Project, which was designed and piloted by NASTAD Haiti in 2014, in partnership with the Haiti Ministry of Health and the Centers for Disease Control and Prevention (CDC)/Haiti. It is estimated that only 44% of the approximately 140,000 people living with HIV in Haiti are in care and receiving life-saving treatment; the Community Follow-up project was designed to address this gap, and reinforce the community-based patient tracking processes supported by people like Rouzeau to ensure that more patients receive sustained HIV care.
The Community Follow-up Project is part of a broader effort by NASTAD Global to develop data systems to enable governments to generate, analyze, and use data to inform strong, evidence-based HIV responses. In the international movement to achieve an AIDS-free generation, it is critical that data be made routinely available and used to provide services to the vulnerable populations most impacted by the epidemic. NASTAD Global is working in Haiti and in eight other countries throughout the Caribbean and Africa to put data systems in place to monitor trends in the HIV epidemic, and identify the populations and geographic areas most in need of HIV services. Recognizing that HIV is one of many infectious disease threats that we face, we take steps to ensure that these HIV surveillance systems can be expanded to other disease areas. For example, in Haiti HIV data collection processes and systems are being expanded to monitor the tuberculosis epidemic and support patient care.
On this World AIDS Day, NASTAD Global celebrates James Rouzeau and the other health workers like him who work within their communities to collect HIV data, and, most importantly, to ensure that people living with and affected by HIV receive the care and services that they need. We will continue to support them as they implement and maintain strategic information systems so that we as a global community may be equipped to respond to today's disease threats, as well as tomorrow's.
Lucy Slater is a global health expert and the senior director of the Global Program at the National Alliance of State & Territorial AIDS Directors (NASTAD). NASTAD strengthens state, territory and global-based public health leadership, expertise and advocacy and bring them to bear in reducing the incidence of HIV and hepatitis infections and on providing care and support to all who live with HIV and hepatitis.