Category Archives: Data

Data and Power: Keynote address to UNAIDS PCB49

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Keynote address to Thematic session of 49th UNAIDS Programme Coordinating Board, 10 December 2021

Thank you moderator, and also for the important work your team and UNAIDS does to strengthen data in the HIV response. It’s an honor to be asked by civil society and communities to join this important discussion on Human Rights Day.

I’d like to take this moment to reflect on the big picture. The hard truth is that funding for HIV is diminishing, and we urgently need data to make hard decisions. Who lives, who dies, increasingly depends on data.

But health data is not neutral: it is shaped by power and inequalities. 

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TedX talk: The Uncounted – the people left out of health data

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https://www.ted.com/talks/sara_meg_davis_the_uncounted_the_people_left_out_of_health_data

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.

Review of The Uncounted in Global Public Health journal

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By Hanna E. Huffstettler & Benjamin Mason Meier

The uncounted: Politics of data in global health, by Sara L. M. Davis, Cambridge, UK, Cambridge University Press, 2020, 310 pp., US$35.99 (paperback), ISBN 9781108704830

The politics that shape data creation and utilisation hold the power to construct visibility in global health. This visibility through data – or lack thereof – not only influences what programmes and populations receive support, but ultimately plays a role in shaping who lives and who dies. This is the message at the heart of The Uncounted, which interrogates how quantitative evidence is developed and implemented in global health. Following from an initial article written under the same title three years ago, Sara Davis examines the global fight against HIV/AIDS to both acknowledge the necessity of data in global health and thoughtfully critique how data are gathered, transformed, and operationalised. The resulting book – intended for both scholars and practitioners – finds new meaning against the backdrop of the COVID-19 pandemic, which has underlined the limitations of data utilization in public health policy.

Click here to read the full review in Global Public Health.

Click here to order your hardcover, paperback or e-book copy of The Uncounted: Politics of data in global health, for 20% off using code DAVIS20 at checkout.

Kene Esom, policy officer, UNDP

Right On 5: Why are we failing to end AIDS? Engaging with the politics of data

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Prof. Cal Biruk, Associate Professor of Anthropology, McMaster University
Dr. Ryan Whitacre, senior researcher, Global Health Centre, Graduate Institute
Kene Esom, policy officer, UNDP

This fifth episode of the Right On Podcast, recorded for the American Anthropological Association annual conference, brings together co-hosts Meg Davis and Ryan Whitacre with medical anthropologist Prof. Cal Biruk and UN Development Programme policy officer Kenechukwu Esom to explore how human rights and quantification collide in the global HIV response.

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New paperback! And a chat with activists in the Uncounted

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Some good news — beginning in October 2020, The Uncounted: Politics of data in global health will be available in paperback for US$35.99 (or 23.99 if you’re paying in GBP)!

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 Politics of Global Health Data – a chat with Oxford RightsUp podcast

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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.

Available on Spotify or Soundcloud, here.

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

Why are we failing to end HIV?

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Photo: DFID – UK Department for International Development/flickr, CC BY 2.0

Reprinted from Med in Switzerland #21, Medicus Mundi International. 

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 →

Health aid accountability and the politics of data

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Screenshot 2020-07-16 at 17.37.54This webinar was organized on June 26, 2020 by the Kampala Initiative: Challenging Realities of “Aid”. Speakers included Dr. John Waters (Caribbean Vulnerable Communities) and Hayden Barthelmy (GrenCHAP), civil society activists from the Caribbean who successfully conducted an HIV study in partnership with communities and researchers; Dr. Carolyn Gomes, winner of the UN Human Rights Prize and Alternate Board Member representing Developing Countries NGO Delegation on the Board of the Global Fund to Fight AIDS, TB and Malaria; and Sara (Meg) Davis.

Click here for the slides and here for the recording.

Right On 4: Meet the speakers

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For this episode, I reached out to two good friends who are wonderful data nerds and activists, Shirin Heidari and Marina Smelyanskaya, to talk about gender, inequality and data. When I invited Malu Marin, a longtime activist for the rights of migrant workers in Asia, she urged me to talk to her friend Jolovan Wham instead – “a very committed activist working directly with migrant workers”. Jolovan has come under more than his fair share of pressure for his advocacy for free speech – so especially grateful to him for his time, and to all three of this episode’s experts. Continue reading →