Where compliance is king

This is the ninth in our series of FrontlineSMS guest posts. In this latest post Aurelio Gomes, who works out of Universidade Catolica de Mocambique, explains their use of the software in monitoring and improving anti-retroviral treatment (ART) compliance among rural communities in Mozambique

Thanks to the US President’s Emergency Program for AIDS Relief (PEPFAR), increasing numbers of HIV-infected people living in poor countries have been given access to anti-retroviral therapy (ART). Successful treatment of HIV depends upon ART recipients maintaining a compliance rate of 95% or higher to prevent the emergence of drug resistance. The commonly used first-line regimen has a low genetic barrier to resistance when dosing is below recommended levels. Not only does widespread resistance lead to a need for costly second-line regimens, but it also threatens to reverse ART survival gains. Worst still, resistant HIV may also be transmitted to others, severely limiting treatment options.

Clinic, Mozambique (courtesy Aurelio Gomes)

As ART therapy becomes more widely prescribed in Sub-Saharan Africa, suitable systems to ensure patient compliance have to be designed and implemented to maximize ART effectiveness. This is especially necessary in rural areas of Africa. Mozambique exemplifies this situation since 80% of the total Mozambican population are rural. Patients are difficult to locate because formal postal addresses don’t exist in these areas. As in many parts of sub-Saharan Africa, residents are not connected to the electricity grid, and lack regular phone service or access to clean water. Stigma and discrimination increase the challenge of ensuring compliance, as HIV- positive individuals are often very concerned about their privacy.

Following initial technical assistance from our partners at Inveneo, we have been successfully using FrontlineSMS for several months to facilitate communication between the HIV treatment centers and the community health care workers (CHWs) deployed in remote rural areas. These CHWs are armed with mobile phones, enabling communication to flow more quickly and accurately, leading to an improvement in health care delivery.

Our FrontlineSMS-driven communication system is helping us maintain a 95% and higher compliance of ARV therapy, crucial for the patient, the success of our programme and efforts to reduce the chances of development of drug-resistant strains of the virus.

Aurelio Gomes
Project Coordinator
Universidade Catolica de Mocambique
www.ucm.ac.mz

Focus on the users, and all else will follow

If we were to have a mantra on the FrontlineSMS project, it would be this: “Focus on the users, and all else will follow”.

From the very beginning we’ve been unashamedly focused on servicing the needs of our growing NGO user base. Much of the advanced functionality you see in the software today has been requested by users over the course of the last four years, and much of the feature request list we’re working through today is based on feedback received since the major MacArthur-funded re-launch last summer. Our focus on the user is beginning to pay off, with well over 500 members actively engaged online. Although we’re excited with our progress, we’re far from complacent and there’s much more we need to, and can, do.

FrontlineSMS Community

With growing numbers of these users actively engaging online, others have started contributing their own stories on how they’re applying the software in their social change work. All that remains now is the creation of the second part of the community puzzle – this time for developers.

With invaluable support from our friends at the Open Society Institute (OSI) and the Free Software Foundation, last autumn we finally solved some lengthy and complex licensing work with the FrontlineSMS code. With a number of educational establishments, NGOs and individual developers keen to begin work, we pushed the code out on SourceForge, posted a community blog entry a little later, and got on with improving functionality and providing continued frontline technical support to the NGO user base.

Although some early partners have already started working with the code, we’ve been holding back on an official announcement until we have everything in place – IRC, mailing lists, documentation and processes, for example – and the code is in the best possible shape for people to work with.

Earlier last month we started working with Aspiration Tech in San Francisco, who will be responsible for helping build the community. Our own developers, a number of users, and other volunteer programmers are all incredibly excited to be working with Aspiration, who are experts in the field. We’ll make an announcement once we’re good to go.

FrontlineSMS Icon - Photo by Erik Hersman (White African), Kenya, 2008

Although there is considerable buzz and excitement around mobile technology and source code at the moment, we’ve been firm believers that the users come first. Without them you have no project, no community. Only now, after increasing numbers of this first community – the users – begin to apply the software in exciting and innovative ways, is everyone ready – developers included – to tackle the second.