We are living in a digital era. Data is considered by some the most valuable resource in the world. Every sector is looking to digital tools and artificial intelligence (AI) to better and more quickly achieve their goals.
Digital technologies can help us make huge strides towards the SDGs, including health for all, but they also come with huge risks that cannot be ignored.
What are our concerns?
Technology is not neutral, safety is not a given and access is not equal. Such problems have led to UN human rights experts sounding the alarm on digital technologies. In many ways the digital world mirrors the same economic, social and racial inequalities that STOPAIDS is fighting today. It is even making them worse.
For example, 2.9 billion people are still offline and being left behind in the digital transformation. Women and girls, as well as those living in rural areas, on low incomes and with less education, are particularly affected. In practice, this has led to people being denied the health services they need.
Further, those that are online and connected are exposed to the risks associated with giving up their data, such as privacy leaks, poor management of health data or losing out on services due to algorithmic bias. People who have historically experienced marginalization and discrimination, such as people living with or affect by HIV, are especially at risk of harm and discrimination.
Many of the problems stem from underlying economic and historical drivers. Digital innovations have been predominantly driven by profit and led by men in the private sector. This ‘data colonialism’ only reinforces the power, assets and influence of big tech companies in the global north.
Meanwhile, poor digital literacy, a lack of a meaningful community voice in much of policy-making and a ‘great fracture’ between world powers has led to a lack of strong, binding international rules in the governance of data and digital technologies.
What are we doing?
Digital Health and Rights Project members STOPAIDS, KELIN and GNP+ speaking on a panel at the UN General Assembly, 2023
It is essential that young people, communities and civil society are empowered to understand and have a say in policy-making that affects their digital rights. We also need global health agencies and decision-makers to put people at the centre of digital approaches. That is why we’re coordinating the global advocacy work across the Digital Rights and Health Project Consortium (DHRP).
We are proud to be part of DHRP, alongside partners including GNP+, KELIN, Privacy International, Restless Development, Warwick University and Universidad de los Andes. Together, we are conducting research on the digital health and rights of communities including young people, people living with and affected by HIV, and women and girls in Vietnam, Colombia, Ghana and Kenya. This research forms the foundation of our advocacy, allowing us to build evidence-based policy recommendations and an international movement of activists demanding their digital rights. We are taking these recommendations to institutions like the Global Fund and the WHO to give communities a say in digital health policy-making and to fight for binding rules that protect our human rights in the digital era.
Interested in learning more about our work? Follow us at @DigHealthRights or contact Molly Pugh-Jones (email@example.com).
- A digital literacy toolkit developed with GNP+ and Young Experts: Tech for Health
- Digital Health and Human Rights of Young People in Ghana, Kenya and Vietnam – Final Project Report. Accompanying policy brief in English and Spanish here, and related article in the British Medical Journal here.
- Digital Health Rights initial analysis – this explores inequalities and the human rights landscape for digital health.
- Digital health and rights country context in 1) Ghana, Vietnam and Kenya and 2) Bangladesh and Colombia.
- A recent Digital health rights campaigner briefing, available in English, French, Spanish and Portuguese.