What does it take to keep HIV services available despite limited resources, political unrest and violence, and a pandemic?

For Alfred Okiria, IntraHealth International’s project director for the Strengthening National Capacity for Integrated HIV/AIDS Health Data Collection, Use, and Dissemination in Support of an Evidence-based Response in South Sudan project, and his team in South Sudan, the answer is data.

Okiria and his team have been supporting the use of strategic information to improve health services in South Sudan for over a decade, moving from email-based information sharing to a scaled-up, more efficient, and stronger data infrastructure for HIV services, local health facilities, and national COVID-19 response through District Health Information Software 2 (DHIS2), an open-source web-based health management information system.

We sat down with Okiria to find out how they’ve achieved their results and what he sees ahead for the future of HIV services in the country.  

1. What are the biggest challenges in making HIV services available in South Sudan?

Data reporting is affected because of the insecurity and internal conflicts. Take Tambura, for example. It’s a high-volume site for HIV services but it has faced insecurity since this summer. The hospital has been closed. Equipment has been lost. Service gets interrupted and most of the population are in camps for internally displaced people. In some areas of the Lakes state facilities had to be closed for about three months due to intertribal clashes.

We’re trying to make sure clients can access services in such unstable regions.

There are regions which are prone to flooding especially Jonglei and Upper Nile states, so when it’s the rainy season some places are cut off completely. Road infrastructure is already poor and there are quite a lot of challenges to move from one point to the other, which affect services, supply deliveries, and data collection. So we’re trying to make sure clients can access services in such unstable regions.

We also have human resources and health infrastructure challenges. There are limited human resources for health in terms of the right number of health workers, their level of skill, where they’re placed, and their level of motivation to support services. This is coupled with limited health care facility infrastructure, especially buildings and space.

As we all know, the pandemic has been a real challenge. The measures that were put in place to stop the spread of COVID-19 included travel restrictions and partial lockdowns, which also affected services. So we’ve been helping the ministry set up DHIS2 for pandemic response, which allows us to capture more data in a streamlined way. And as we speak, we are supporting the DHIS2 COVID-19 surveillance tracker, which will capture data and support the response. We’re also working with the Ministry of Health on a DHIS2 COVID-19 vaccination tracker and with the CDC to set up vaccination sites.

At the end of the day, even though it’s challenging, this data collection and monitoring connects clients to the services they need to be healthy.

2. How has the country’s response to HIV changed over the years?

South Sudan is collecting and using more data about HIV services and clients’ needs than ever before—and using more strategic information to connect people to care.

IntraHealth, has been working in South Sudan since 2006—back before it was an independent country. The Ministry of Health started with six health facilities, working with the World Health Organization (WHO) to provide HIV care and treatment. There were a lot of challenges. There was a lot of stigma and discrimination around HIV in the country, so it was a very difficult start. IntraHealth worked with the South Sudan People's Defense Forces (formerly the Sudan People's Liberation Army) to help them set up and coordinate HIV services.

Then we worked with the US President’s Emergency Plan for AIDS Response (PEPFAR) and The Global Fund to slowly scale up, using the data we had to focus on regions where HIV prevalence was high, such as Greater Equatoria. Until 2015, we provided technical assistance to facilities for service delivery, but we had to change to direct service delivery to support sites and help improve the quality of HIV services they offered.

By 2020, PEPFAR was supporting 84 sites up from 48 through different implementing partners —including scaled up services in the Lakes and Western Bahr regions.

In terms of data collection, we had to make sure HIV programs could capture the right data for programming and do so efficiently. There were a lot of challenges—human resources, training, information technology infrastructure, motivating data clerks, and parallel reporting. One was that the HIV data were sitting with the WHO and the ministry didn’t have direct access to it—they had to request the data from the WHO. It should have been the other way around.

We started looking for ways to strengthen these systems, and make sure the ministry has the up-to-date information they need to manage their facilities and health workers. So we transitioned to the web-based health management information system DHIS2. And we switched the process so that the ministry now has direct access to the data. While there are still some significant challenges, the data has drastically improved.

3. But how do data help clients get HIV care and treatment? 

All the data we capture at the ministry level every year is used for South Sudan’s annual Country Operational Plan, the US government's plan for annual investments in HIV services. The program data are used to support the argument for increasing resources for HIV services. Based on the data we collected, PEPFAR increased its funding from around US$21 million to $38-40 million this past year. That means more HIV services for the people in South Sudan who need it most.

Data collection and monitoring helps clients receive services and helps health workers bring them back to care.

We also track HIV prevalence among key populations and pregnant mothers. Using this surveillance, we can plan for and mobilize HIV services. We use all of this data to procure the right amount of drugs and supplies.

We also recruit staff who lead data collection and site management at health facilities. We have a weekly dashboard that summarizes the data from each facility, including key indicators such as case identification, retention, and treatment. Field officers use this data to addresses key challenges affecting the HIV program. They monitor program growth and identify solutions for each facility.

We do monthly data reviews at the national level to make adjustments to our programs and make the necessary drugs and services available to people who need them.

At the end of the day, this data collection and monitoring helps clients receive services and helps health workers bring them back to care. It allows us to identify those lost to follow up (client who have interruptions in their treatment), those who have missed appointments, and those who have high viral load to provide them with adherence counseling.

4. What is the future of health care in South Sudan?

As much as there are challenges, there is hope for the future of health care in South Sudan.

Right now, the field officers we work with are building their skills to support HIV services at health facilities in South Sudan. Our dream is that they will become the next generation of leaders and managers in health departments and offices at all levels. We’re helping them build skills to use data for planning and decision making.

That’s a big thing for South Sudan—after all this training and recruitment, these field officers will be staying here to build their careers and build their country’s health systems.

 

Strengthening National Capacity for Integrated HIV/AIDS Health Data Collection, Use, and Dissemination in Support of an Evidence-based Response in South Sudan is funded by the US Centers for Disease Control and Prevention.