Project Masiluleke: Texting and Testing to Fight HIV/AIDS in South Africa

When Krista Dong and Zinhle Thabethe came to the 2006 PopTech conference in Camden, Maine, they hoped to expand their fight against HIV/AIDS, one of South Africa’s greatest problems. They were the founders of iTEACH, an HIV/AIDS and TB prevention and treatment program in KwaZulu-Natal, South Africa. Impressed by their story, conference organizers and Robert Fabricant of frog design came together with iTEACH to address these real-world challenges through the conference’s vision - accelerating social innovation through technology.

Addressing HIV/AIDS was particularly challenging in iTEACH's home in Pietermaritzburg, KwaZulu-Natal. High infection rates had overwhelmed medical facilities. Many individuals were reluctant to come forward for testing, given the stigma around the disease and the differences between HIV/AIDS and the model of disease used by traditional healers. Finally, the government’s hostility to the diagnosis and treatment complicated all efforts to address the disease.

The first project from the PopTech encounter was a plan to use interactive software to extend medical personnel. The effort, essentially an attempt to “clone the doctors,” was a failure. In the following months, the partners met first in New York and then in South Africa. They decided to focus on encouraging individuals to be tested and to look for ways to target their messages to men. They enlisted Gustav Praekelt, a South African software developer, and together they sought other partners and supporters, with PopTech creating its Accelerator to move the project forward. They named their working partnership Project Masiluleke (often shortened to as Project M), using the Zulu word meaning “wise council,” or “helping hand.”

The group developed a model for engaging the broader community at every stage in the HIV lifecycle from awareness to testing and follow-up. This model centered on a few key principles:

  • leveraging mobile technologies to dramatically increase access to information and services.
  • creating a set of services that can be overlaid on top of the healthcare system with minimal integration.
  • adopting an outside-in model from the community perspective, rather than augmenting existing healthcare services.

With this model in place, the partnership targeted two approaches. The first effort harnessed mobile phones to deliver a series of messages designed to raise awareness and connect users to information. The second approach was the development of a self-test kit with mobile support, so that individuals could determine their HIV status in the privacy of their own homes.

These efforts were outside mainstream approaches. The focus on testing was novel in itself. A “know your status” campaign was neither a direct deterrent to new infections nor a treatment for individuals already infected. Indeed, success of the campaign could potentially add to the already overburdened medical facilities. The specific approaches were also out of the box. With the first effort, no one knew whether a text message on a mobile phone would reach the right individuals or influence behavior in a way that would help with the problem.

The second effort was an even larger leap. No agency or government had approved self-testing for HIV/AIDS. It was not clear that untrained individuals, particularly those with low literacy, could perform tests well enough to get accurate results. Furthermore, even if the results were accurate, it was not certain that receiving a life-threatening diagnosis over a cellphone rather than in the presence of a professional counselor would lead to appropriate understanding and follow-up behavior. The project had to work through failures and develop ways to measure success.

The traditional Zulu greeting, "Sawubona," literally translates as "I see you." The major challenge faced by Project Masiluleke could be captured in this local greeting – could Project M see the lives of the individuals they hoped to help? Could they find ways to understand each other and the individuals threatened by this disease well enough to design effective solutions to a major health crisis?

 

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