The Role and Impact of Open Data in the Fight Against HIV/AIDS

Today is World AIDS Day.

December 1st has long been an important date on my calendar. I try to take some time out every year to give my attention to understanding the state of progress toward defeating the scourge of HIV/AIDS.

During my graduate program, one of my first semester-long internships was dedicated to assisting a project team to digitize and make available the Jon Cohen AIDS Research Collection. Cohen's groundbreaking book Shots in the Dark: The Wayward Search for an AIDS Vaccine was one of the first comprehensive reports on the emergence of the virus and the scientific struggles to combat it. Cohen donated all of his papers to the University of Michigan for archiving and sharing.

Specifically, I conducted usability tests with targeted researchers of the collection to ensure that the University of Michigan's DLXS platform would work well for navigating the collection. Being close to that collection and taking some time out to read Shots in the Dark opened my eyes and set me on a path to joining organizations like ONE and DATA and contributing to the Global Fund.

I'm taking some time out here at [dys+-(u)topia] to just draw some quick attention to the role and impact of historic open data resources like Cohen's Archive as well as the great work of organizations like ONE and their annual DATA reports, and particularly their extensively published open methodologies (see page 77) and use of open governmental data sets. Through their work governments, NGOs, and activists get a sobering real-time picture of the ongoing challenges countries are experiencing to stay on top of the spread of HIV/AIDS. We need this data and research (and the funding to produce and support it) to organize policy and resources.

Getting down to the science of all this--it was announced just yesterday that another set of incredible open data from the Los Alamos National Laboratory is now laying the basis for one of the first efficacy studies for an investigational HIV-1 preventive "mosaic" vaccine. The study--named "Imbokodo," the Zulu word for "rock" from a South African saying referring to the strength of women and their importance in the community--could lead to the development of a vaccine that can address the fuller range of diverse strains of the virus.

As the Lab's press release explains:

The HIV database holds sequences gathered from scientists all over the world; it currently houses over 800,000 HIV sequences. Mosaic vaccines are computationally designed from protein sequence data that were extracted from this wealth of sequences, and the computer code used to design them was inspired by the way HIV-1 itself naturally evolves. The problem the mosaic code sets out to solve is to design just a couple of sequences that in combination will best capture the global diversity of the virus.

HIV/AIDS remains one of the most destabilizing epidemics in the developing world, and continues to persist and raise public health concerns even in more developed countries. We need support and resources for open data to stay on top of HIV/AIDS and ultimately defeat it.

I hope you will join me today in both taking some time out to consider the ongoing suffering on a human level that HIV/AIDS continues to exact, but also reflect on the nitty-gritty work taking place with data and science that is forging ahead to help shift the balance.