Governing digital personal data to strengthen reproductive, maternal, newborn and child health services delivery in fragile settings
Digital health technologies have the potential to provide greater access to better quality and more affordable care, but governing the digital personal data generated by and required to support many digital health innovations is a critical challenge. With the increased digitization of health data, it is becoming more shareable, visible, and accessible across time and locations to many different actors. This data accessibility and mobility can undoubtedly help service delivery to improve reproductive, maternal, newborn, and child health (RMNCH) services, especially in fragile settings where digital health solutions can support overburdened traditional health delivery systems.
However, this digital personal data contains personally identifiable, intimate information that could expose individuals to a range of risks if it is used unlawfully and unethically, especially in fragile contexts where people are vulnerable to sexual violence, possibly unwanted pregnancies, or where reproductive rights are contested. The policy, regulatory, and operational practices to support digital health data governance are not strong enough in the Global South and could lead to breaches of personal health data, especially among women and children. In the absence of sound data governance systems, potential beneficiaries of RMNCH services are vulnerable to exploitation and exclusion, undermining the benefits of digital health.
This project aims to understand the health and data governance systems in the West Bank and Gaza and Jordan. The research will explore how governments are approaching new national digital health strategies and how these systems interact with human rights concerns. The aim is to understand operational-level practices of data governance, with a particular focus on fragile settings, how these intersect with human rights and gender equality, and what changes are necessary to ensure that vulnerable populations receive trusted and quality care.