The main areas I wish to explore are around the topics below:
• Access to Health Data for research and development (rationale, ethics) – The main aim here is to explore why health data collected by health institutions should be accessible to actors beyond this institutions and governments such as the patients themselves as well as clinical health researchers and private sector players in the health space. This also includes any publicly funded research in the health sector regardless of region where clinical data originated. To avail such access would come with certain technical, legal and ethical challenges so questions around how can these challenges be mitigated should be explored.
• Farification of Health Information Systems – The main aim here is to explore and expand on the data ownership aspects as well as the FAIR or non-FAIR nature of the main health Information system implemented by health ministries (largest health data aggregators) in sub-Saharan Africa – DHIS2 – has been setup. DHIS2 is an open-source HIS project coordinated by the HISP Centre at the University of Oslo (UiO). What concepts/innovations exist with regards to Fair Data technologies that can be utilized by heath sector actors in the implementation of FAIR Data repositories and possibly open access initiatives. This entails the lessons learned from the phased implementation of the VODAN Africa Project which is aimed at enhancing health data analysis by the development of an “Afrocentric system that would ensure data ownership in residence, with data analytics available at the point of care and a smart system for data visiting”
The main information to be gathered revolves around:
• FAIR data as a concept, its principles, technical implementation of a FAIR system, Placement of FAIR Data in Health Research (concept recognition), current FAIR data innovations, Health information systems, Global Ethics and legal precepts governing health access and utilization.
• DHIS2 as a Health Information System, its implementation and coverage in SSA, data ownership, fairification policy on DHIS2, current FAIR state of DHIS2.
• VODAN project – concept, project aims, outcomes (2 phases), lessons learned during implementation (Kenya, Ethiopia, Uganda, Nigeria)
The subject area is strongly related to the field of data science, AI and Information system architecture and engineering. A large part of the analysis would be on the hurdles encountered in the technical implementation of FAIR digital health systems and relevant repositories such as data rights & ethics, ownership and accessibility, FAIR integration concepts, data visitation concepts etc.
