Lack of quality, clear, accurate and up-to-date information is a major challenge that prevents individuals with HIV from accessing healthcare services and lessens the likelihood that an individual will have success with self-management and long-term treatment. Too often people with this disease feel they cannot talk to their healthcare professional or ask questions, and as a result, they feel removed from the decision making process. A consequence of this is worsening health outcomes. Having independent, clear and accurate information enables individuals and communities affected by HIV to engage with and improve healthcare services, take part in their disease management and challenge stigma and discrimination.

It’s equally important to increase access to quality information for health workers. It is critical that they have all the information they require to make informed decisions and provide the necessary support to their HIV-positive patients. This is a challenge particularly in resource poor settings where infrastructure and training may be lacking.

Our mission here at NAM is to provide trustworthy information that helps support people living with HIV, enabling them to...

• Take control of their lives and their healthcare
• Understand and adhere to their treatment
• Better communicate with healthcare staff
• Live longer, healthier and better quality lives

In terms of healthcare professionals we aim to support them in...

• Delivering the best possible services for people with HIV
• Offering the most effective support for people living with HIV

The first Positive Action grant, given in 2001, was instrumental in scaling up our programme from its original UK focus. With Positive Action’s support, we developed a directory of HIV services for patients, mapping them by country. The final project, named HIV&AIDS Organisations Worldwide, was published and distributed to all 2,500 listed organisations in 189 countries. The network created by the project allowed organisations to share experiences and advice as well as collaborate on projects.

With the roll-out of antiretrovirals in resource-limited settings, NAM realised the need for providing information to help communities and services adapt to the change. Having built a network of HIV organisations, we were in a good position to provide the information. One initiative developed for this was an electronic newsletter. It provided vital support and is still reaching around 35,000 people today. Its main focus is to provide updates on issues surrounding HIV treatment.

Another very successful initiative supported by Positive Action is the development of electronic bulletins from important HIV conferences. For last year’s International AIDS Conference alone we had over 50,000 subscribers situated all over world. Within 24 hours of the conference, subscribers were able to access a local translation as well as read about the data’s implications for delivering quality treatment and care.

The most recent project that Positive Action has supported is the Electronic-Atlas project. It is an online resource where users can click on a country and access locally relevant information. This will include the latest HIV news, translated patient information, information about organisations or resources and best practice advice. The goal is that over time it will become an interactive resource where users can upload, access and share resources, enabling the delivery of better quality treatment and care.

The initiatives supported by Positive Action have seen a wide global impact. Services such as our newsletters and bulletins reach tens of thousands of people and the interactive Electronic-Atlas has the potential to scale this up even further. On a personal level, access to information empowers people with HIV to take charge of their own health and engage with healthcare and social service providers to tackle the myriad issues related to living with HIV together in direct and meaningful ways.