Tag Archives: Data

Digital health & rights: New research report & policy brief

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:

Data and Power: Keynote address to UNAIDS PCB49

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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Right On 4: Meet the speakers

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

Right On 4: Who will be left uncounted in data on COVID-19?

How are inequality and discrimination shaping data about COVID-19, and who is being left invisible and uncounted? On the launch of her new book on data and human rights, Sara (Meg) Davis speaks to social worker and rights activist Jolovan Wham in Singapore, who describes how thousands of migrant workers are being detained in overcrowded dorms, and were missed by the official mobile contact tracing app. In Geneva, Dr. Shirin Heidari (GENDRO) and Marina Smelyanskaya (Stop TB Partnership) address the global need for feminist principles and respect for human rights to gather data on COVID-19. Davis’ new book, The Uncounted: Politics of Data in Global Health is available from Cambridge University Press.