What is the empirical focus?
Empirically, the research will identify digital initiatives which focus on personal data, ongoing in the primary healthcare services in India, Nepal, and Bhutan.
The research will seek to understand the different social practices that underpin the generation, collection, recording, tracking, reporting, storage, use, and sharing of personal data and how these are shaped by the context. We will examine how this data responds to the promise of improving data quality (by focusing on names, not numbers), strengthening continuity of quality care (being able to identify dropouts and take action), and providing more personalized attention where it is needed most particularly to marginalized and excluded groups– for example, for high-risk pregnancies and malnourished children in refugee settings. The research will also identify different challenges that emerge relating to the adequacy of data protection processes, potential misuse and commercial exploitation of personal data, its use for targeted surveillance, and deliberate exclusions of groups of people.
The project encourages Quality Research Methodology
Projects under this study include:
- What is the stakeholder ecosystem around DPD (digital personal data) including the drivers, producers, medical staff and beneficiaries accessing RMNCH services?
- What data is collected, shared and used within the institutional context which shape processes of access to care and information, continuity of care, and quality of care and their implications on human rights, gender equity, data governance and their interactions?
- What are the existing regulatory and legal frameworks around the use of digital technologies and personal data within public health systems? How are these enforced? Are they effective at protecting individuals – their data and human rights?
- How do these data governance regulatory and legal frameworks interact with:
- Non-discrimination and gender equality legal and policy frameworks?
- Health-related policies and programs?
- What are the obligations and responsibilities of the different stakeholders around digital technologies and personal data in order to enhance trust, gender equity, human rights, and data governance within the health program? How are these regulated and enforced? And to whom are these stakeholders accountable?
- What are the main observed and reported areas of concern raised by stakeholders in the ecosystem in relation to:
- Rights of data subjects, i.e. beneficiaries?
- Security and integrity of data and systems?
- Who are the main suppliers of the technology solutions for DPD in RMNCH in the PHC sector, and how are these solutions designed, implemented, and maintained?
Who is this for:
Health and Informatics students, working in a group but writing individual theses. The project is particularly relevant for students who are interested in assessing the impact and evaluation of digital health solutions.