The Implementation Network for Sharing Population Information from Research Entities (INSPIRE) was established by African Population and Health Research Center (APHRC) in collaboration with the Analyzing Longitudinal Population-based HIV/AIDS data on Africa (ALPHA) network, South African Population Research Infrastructure Network (SAPRIN), and Committee on Data of the International Science Council (CODATA) in 2020.
Phase 1
- Constitution of the network
- Use HIV data from LPS partners to design and prototype a FAIR data sharing platform
- Engage with analysts and policy makers to answer policy-relevant questions using network data
Phase 2
- Widen the partnership to also include partners that provide secure data environments
- Bring in new types of population-health data
- Build sustainability through links with governments and regional agencies
INSPIRE Network Data Hub
The ultimate goal of INSPIRE is to establish an infrastructure for sharing health research data coming from population surveillance and clinical sources in a single “virtual” repository, where the entire body of data can be searched and accessed through a single set of services. In some cases, the data themselves may not reside in the hub, but instead may be catalogued, with external reference to the sites that own, publish and maintain them. The hub would be a cloud-based system and governed and maintained by organizations based in Africa. The conceptual diagram below shows the different aspects of the INSPIRE Data Hub.
The yellow oval represents the hub itself. It is a large database which indexes all the available data, stores the metadata and can be accessed online through several services. The box in the lower left-hand corner of the diagram represents a harmonized data model used to describe all the data contained in the hub. It is based on several standard sources, such as, the Data Documentation Initiative (DDI) standard and the Observational Medical Outcomes Partnership (OMOP), a widely used standard model within the clinical domain.
There are three basic types of services: “on-ramps,” “off-ramps,” and discovery services. On-ramps are channels by which data is provided to the hub. Off-ramps are channels which support the analysis and use of the data. The discovery services allow potential users to search and browse the data within the system.
Phase 1 of the INSPIRE project will be a prototype illustrating the INSPIRE data model and giving working examples of the different types of services. It will build on the previous efforts by the INDEPTH and ALPHA Networks.
Phase 2 is envisioned to be a larger effort which will build on the concepts in Phase 1 to bring them to a production-ready state. This will involve not only technical developments, but also the establishment of governance and service-level agreements that allow for the use of the Data Hub in the real world.
Beyond Phase 2, these ideas may be expanded both in terms of their breadth of coverage and geographical reach.