Digital health & rights: New research report & policy brief

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Scene from an outdoor restaurant, young girl with lap top.

We were thrilled to launch our final research report on digital health and human rights of young adults, based on 18 months of research with 174 young adults and 33 experts in Ghana, Kenya and Vietnam, policy brief based on the research, and a new working paper based on the second phase of the study in Bangladesh and Colombia.

In Ghana, Kenya and Vietnam, we found many young adults used web platforms (such as Google), social media platforms (such as Facebook, Instagram, TikTok, Twitter and YouTube), and social chat (such as WhatsApp, Zalo) to get health information, advice and peer support on sexual and reproductive health, HIV and Covid-19. The platforms brought clear benefits to young people, but also risks of censorship, abuse, stalking and other harms. These issues were largely not addressed by national laws and policies, and by global digital health policies such as the World Health Organization (WHO)’s Global Strategy on Digital Health 2020-2025.

The research was conducted using mixed qualitative methods and a transnational participatory action research approach in which communities of people living with HIV, as well as national civil society groups and human rights lawyers in Ghana, Kenya and Vietnam, participated in design of the study, data-gathering, analysis, and validation of the final results and recommendations. Our policy recommendations are outlined in a policy brief in English and Spanish.

We raised these concerns in an open letter to the director-general of WHO, Dr. Tedros, calling on WHO and other global health agencies to take action to protect young people from risks of harm when they seek health information online.

The study in Ghana, Kenya and Vietnam concludes the first phase of a multi-country study. The study continues in Bangladesh and Colombia, conducted in collaboration with social scientists at BRAC University and Universidad de los Andes, as well as civil society groups in both countries. The two universities also published their working paper based on desk review of laws and policies governing digital health in both countries, Digital Health and Rights in Bangladesh and Colombia.

We discussed the findings with researchers, social media influencers, health NGOs and an expert on sexual and reproductive health from WHO in a webinar, and the slides are below:

2022.11.22-dhrp-findings-Downloa

Call for consultants: Digital health and rights research

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We’re looking for a consultant! To support the mandate of the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, the Global Health Centre will provide high-level research and technical assistance in drafting a research report on Digital Innovation, Technology and the Right to Health, and will also support the Special Rapporteur’s consultation with a broad range of stakeholders.

Interested? More details below, including how to apply by the deadline of 30 June 2022.

2022.06-cfp_research-consultant-1Download

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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African key populations’ engagement with global health financing institutions: A rapid review

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I was sorry to see recently that the site of African Men for Sexual Health and Rights (AMSHeR) is down, along with their 2016 report: African key populations’ engagement with global health financing institutions: A rapid review, one of my favorite past projects as a consultant. I’m sharing here to keep it online.

The study assessed the experience of sex workers, men who have sex with men, people who use drugs and transgender people in Africa with consultations for the Global Fund, UNAIDS and PEPFAR. An online survey had 99 respondents from 25 African countries, and I spoke with key populations representatives in Cameroon, Kenya, Malawi, Nigeria, Uganda, and Tanzania, as well as a focus group in Malawi. The report was cosponsored and co-authored by AMSHeR, the Africa Sex Workers Alliance, Gender DynamiX, and Transbantu Association Zambia.

  • 42 percent of key populations who responded had been consulted on national HIV strategic plans, 33 percent on Global Fund funding requests, and 19 percent on PEPFAR operational plans
  • Many complained that consultation was cursory and tokenistic, and few had seen the final plans or budgets to verify whether their input was included
  • Participation was complex, time-consuming, and unfunded — it often involved taking time off from day jobs, or travel at the respondent’s own expense
  • Some described retaliation or threats from key actors in their countries if they criticized performance of existing programmes
  • Despite the challenges, most expressed determination to continue to engage, in order to press for meaningful change.

As we think about future development of mechanisms to manage funds for the Covid-19 response, what works and what does not, it’s important to hear and reflect on these voices. The report includes recommendations, which the report partners discussed in depth with the Global Fund, UNAIDS and PEPFAR at the time.

More broadly, perhaps we should think about a community HIV archive to save reports like these from vanishing…

Read the report.

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.

The Persistence of Chinese Rights Defenders

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Scholars have recently critiqued human rights as a purely Eurocentric construct that has failed to find wider appeal and is now on the decline. Some cite the apparent success of China’s repressive political regime in support of this argument, but depicting China as uniformly authoritarian risks missing the persistence of domestic forms of human rights advocacy and mobilization.

This chapter, “The Persistence of Chinese Rights Defenders”, which I wrote a couple of years ago for the Oxford Handbook of Law and Anthropology, draws on my experience as a rights advocate to review the history of civil society mobilization in China since 2000, including actions taken in domestic courts, in non-governmental organizations, and through social media. Despite repeated crackdowns, the arrest and disappearance of leading human rights defenders, and Chinese authorities’ interference with UN human rights mechanisms, some Chinese human rights defenders do find innovative ways to persist in rights-based advocacy, such as the practice of weiguan (public counterveillance during political trials).

I argue that the world has entered a more intense phase of struggle over the meaning and application of human rights norms in diverse local contexts, and that the human rights framework facilitates transnational solidarity.

Enter the Cyborgs: Health & human rights in the digital age

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It was a pleasure to co-edit this special section of the Health and Human Rights Journal with Carmel Williams on “Big Data, Technology, Artificial Intelligence and the Right to Health”. It gathers a diverse group of anthropologists, human rights lawyers, tech researchers, rights activists, and UN policy officials to explore early thinking on this rapidly emerging field.

As Carmel and I wrote in our editorial, COVID-19 has forced many of us into a strange new intimacy with our phones and laptops: those of us in the elite with the privilege to work from home have virtually melded with our machines. Personally, I don’t think I’ve been farther than one room’s length from my smartphone since March 2020. So if we are now basically cyborgs…living “on the boundary between fact and fiction” (Haraway 1995), what use are 20th century human rights?

A bunch of smart people tackled this and other questions, ranging from the rights of children in the digital age, to the role of tech in human rights investigations, to the role of the private sector and UN agencies, to the possibilities for new forms of civil society and community engagement in the digital space. The issue is available for free download here.

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.