Data is increasingly important in planning and decision-making, but data can also be biased and shaped by our assumptions and gaps in knowledge. When this gap-filled data is plugged into algorithms, it can amplify existing forms of discrimination.
For example, the global HIV response is being undermined by the fact that many governments deny the existence of the key populations at greatest risk — gay men and other men who have sex with men, sex workers, drug users, and transgender people. Since no data is gathered about their needs, life-saving services are not funded, and the lack of data reinforces the denial. This creates a data paradox which can warp national health priorities and plans.
As this Tedx talk explains, stigma, discrimination and inequality are systematically creating invisibility which can keep marginalized, stigmatized groups uncounted and unserved. To break the vicious cycle of this data paradox, we have to change the power relationships that keep some groups hidden and on the margins.
To order from your local bookshop, try Indiebound – or if you’re not sure who that would be, go to Bookshop to order it online while supporting independent booksellers in general. The book is also available from Amazon, of course — but please support independent bookstores if you can. Wherever you get your copy, I’d be grateful for an honest review on Goodreads or Amazon – in our data-driven world, the more reviews it gets, the more visible it will be.
I had the chance to reunite with some of the Caribbean activists I wrote about in the book, who did their own community-led key population size estimates in 6 countries that had never had them before – as the book describes, they mobilized to draft the questionnaire, develop the research methods, interview hidden key populations, and analyze the data. Thanks to the amazing online HIV2020 conference organized by communities living with and affected by HIV, we were all able to reunite on Zoom and geek out about participatory action research. Watch the recording here. Look on the right-hand side of the screen for interpretation in Spanish, French, Portugese and Russian!
We’ll have more events soon – including an exciting one organized by AIDS activists, so please stay tuned.
The COVID-19 pandemic has brought questions around global healthcare financing and equitable access to treatments to the fore. But this is not the first time a spotlight has been thrown on the thorny issue of fair resource allocation in efforts to tackle global health issues. In her book, “The Uncounted: Politics of Data in Global Health” (Cambridge University Press), Dr Sara Davis considers how human rights issues can affect the data which underlie global healthcare funding. She looks closely at the indicators which drive resource allocation, the metrics used to measure success in tackling health issues, and the people whose experiences healthcare data often fails to capture. Ultimately, in a world of finite resources, this data plays an important role in determining who is more likely to live or die.
Interview with: Sara Davis (Graduate Institute of International and Development Studies, Geneva)
Host: Natasha Holcroft-Emmess
Producer/Editor: Christy Callaway-Gale
Executive Producer: Kira Allmann
Music: Rosemary Allmann
As the International AIDS Conference holds its first virtual meeting, it’s time to consider the politics that create gaps in data for the fight against HIV, writes Sara L.M. Davis
This year was supposed to be a celebration – the year we reached the milestones set by the UN General Assembly to end HIV by 2030. But as the International AIDS Conference, the world’s largest meeting of HIV scientists, officials and activists, convenes online, it is clear that the world is far off track. Why? Continue reading →