The Closed User Group: Harnessing Mobile Technology to Accelerate a Coordinated HIV Response

From 6-10 July, the AIDS2020 Virtual conference is convening thousands of researchers, policymakers, program implementers, donors, and government leaders to share cutting-edge research and best-practice models in the global HIV response. Mobile technology is enabling many of us in the development community to pilot ground-breaking, lifesaving innovations for last-mile health and resilience. Join me as I facilitate a dynamic m-health panel discussion — Harnessing the Power of Technology and Innovative Methodology, — which also introduces World Education Bantwana’s Closed User Group model, which is dramatically improving coordinated responses at scale in Uganda.

by Enoch Kazibwe, Operations Manager, WEI/Bantwana, Uganda.

Through the USAID/Better Outcomes for Children and Youth project, World Education’s Bantwana Initiative is demonstrating how low-cost mobile-phone technology, deployed at scale, dramatically enhances real-time communication and coordination – and ultimately, HIV and child protection outcomes for children.

In Uganda, 85% of our citizens live in rural areas where distance makes it difficult to access basic services needed to stay healthy and safe. This is particularly true for Uganda’s 8 million vulnerable children, including an estimated 95,000 children and adolescents living with HIV. Weak coordination between district-level staff and community-level health and social welfare structures delay access to urgent, lifesaving services for children experiencing abuse. For those living with HIV, poor coordination results in dropping out of ART care, thus compromising adherence, viral load suppression, and overall well-being.

“Before our connection to the CUG, health workers would need to pay a visit to the household for assessment and/or referral of a child struggling with retention or adherence issues for further management. This was very tedious and expensive, and in most cases, clients would not be visited.”
– Health Clinic Manager, Mayuge District

In 2016, the Bantwana Initiative of World Education leveraged its commercial relationship with MTN Uganda, a national telecom services provider, to set up a network feature linking 3,600 health/HIV, social welfare and child protection community and district actors through a Closed User Group (CUG). The CUG format allows unlimited phone calls and exchange of text messages among para-social workers, police, health workers, political leaders, education officers, and local partners from case identification through service delivery to case closure. The CUG costs the project 1.74USD per user, per month.

Existing standard operating procedures and protocols combined with timely communication are leading to effective coordination. The CUG system enables users to immediately respond to reports and mobilize community influencers to help address violence against children, including urgent child rape, gender-based violence cases and related issues of early marriage for adolescent girls. Coordinated actions by clinic and community teams have fostered a holistic response to complex non-adherence and viral load suppression issues for children living with HIV. As this case study on the CUG confirms, the system has contributed to impressive results: In one year, case reporting, service referral completion, and child protection case closure increased by 75%, 39%, and 28%, respectively. Treatment adherence and viral load suppression improved by 20% and 17%, respectively, for CLHIV.

As a Community Development Officer from Bugiri district remarked, “Before the Closed User Group, there were so many cases that I would just hear about. Most of them would actually go unattended…But now I am called instantly and the response is much quicker.”


The CUG: A ground-breaking solution for a COVID-19 world

The CUG takes on a whole new meaning in a COVID-19 environment when human interaction is suspended or highly constrained as the pandemic continues to evolve.

COVID-19 has underscored why it is critical to imagine alternative ways of delivering care to vulnerable populations. We can no longer rely on prevailing models of peer-to-peer interventions, trainings, mentorships, and drug delivery to clients on ART when clinics are overwhelmed and essential health personnel are redeployed to a pressing pandemic.

Innovations like telemedicine have crystalized why it is essential that we invest in simple, low-cost technologies that enable consultations, remote delivery of care, and follow up on clients’ ART refills. While these innovations can protect frontline health workers, they also require inputs to upgrade these providers’ capacity to deliver care without seeing children and families in person.

Although it is early days to predict where COVID-19 will leave the world, especially as it relates to health-seeking behaviours, it is quite clear that some things will never be the same. The time is upon us to invest in digital technology that enables tracking of children and caregivers, mapping of their physical locations, and attaching them to health and social protection personnel for urgent care and consultation. As a low-cost, affordable technology already tested at scale, the CUG should be considered as part of our national — and global — response.