Abstract
Governments and some non-state actors, i.e. development and humanitarian organisations across the world and in many low- and middle-income countries (LMICs), are rapidly implementing digital systems for strengthening health systems. The use of ICT in health care systems is not new with many starting in the 1990s. But what has changed over the last decades is the advancement in technology and data processing and exploitation capabilities which are providing ever increasing powers to collect, process and gather intelligence. And also increasing involvement of private sector, raising questions in partnership with public sector, and understanding the implications, and so the safeguards to be adopted.
By taking a human rights approach to exploring health information systems we are able to question how decisions are made, to explore and test whether the existing safeguards are sufficient to protect people and their rights, to question the infectiveness of such systems. It also provides a framework to identify the actors within the ecosystem, and in particular who is missing, and assess the policies and practices of those with individual and shared obligations and responsibilities. Finally, in addition to looking at the systems and the regulatory framework, a key part of this process is to document the lived realities of people affected and the impact on their rights including how are those affected involved in decision-making processed, whether the systems meet the needs of those who are meant to benefit from them, and how do these systems may intersect and interact pre-existing injustice, i.e. exclusion, discrimination, etc.