Implementation Network for Sharing Population Information from Research Entities in East Africa (INSPIRE-EA)

Decisions on health policy and provision should be made using high quality data from multiple sources. The UN have encouraged data to be Findable, Accessible, Interoperable, and Reusable (FAIR) but much of the data in Africa has not reached the standards of FAIR data. Population data on health are important to measure many of the indicators for the Sustainable Development Goals (SDG), including the Universal Health Coverage (UHC). In most Eastern African countries, health and demographic sentinel surveillance (HDSS) sites are used to collect health data from within populations. The ALPHA network has demonstrated how HIV data from HDSS can be used to show how HIV affected the population, and the impact of HIV services and policies (including the delivery of anti-retroviral therapy) on the health of people living with HIV.

The overall aim of this project is to create the Implementation Network for Sharing Population Information from Research Entities (INSPIRE) network in East Africa. This recognises the value of sharing harmonised, FAIR data across countries and across settings, and it sets up the mechanism by which these data can be produced.

The INSPIRE network will build the key components for the data platform. Firstly we will bring together the institutions that collect primary data through HDSS, and to outline the benefits and support that such a network could bring to HDSS. The proposed network would be modelled on the INDEPTH network, and use SAPRIN in South Africa (www.saprin.mrc.ac.za) as an example of how it could work. The goal of this component is to establish a partnership which leverages population health data from different institutions into FAIR data that enables high quality analysis to answer policy relevant questions.

The second component is to establish the technical requirements of FAIR data and to make the foundations to produce the data. Building on the work of ALPHA network, we will use automated methods for HDSS partners to extract, transform and load their own HDSS data into a common database. We will retain the provenance of the data through industry standard data documentation which is important for FAIR data.

The project will develop and standardise the vocabulary to describe longitudinal population health data in Africa, contributing to international standards so that researchers can understand and search the data. The project will explore the way in which the population health data can be linked with the electronic health records (EHR), which are being developed in Eastern Africa.

The third component will encourage the use of the data in order to make the platform sustainable. The project will identify the value of the data, and change the culture towards population health data, demonstrating how the data can be analysed to answer important health questions.

Longitudinal, population data on health, while essential to understanding the demand for health services, has been left behind by the digital revolution. There is an urgent need to change this situation and find a solution which will provide harmonized FAIR data that can be compared across countries and across different health conditions. This project would establish the partnerships that are needed to develop and maintain such a system, and will set up the technical capacity to be able to set up a FAIR harmonised database for population health.

The INSPIRE network will bring together research entities together to form a way to support health and demographic sentinel surveillance (HDSS) in populations in Eastern Africa. The impact of this project will be felt in several ways. Firstly there will be an impact of data processes and the people who deal with data in Eastern Africa. Next there will an impact on how data are seen, used and analysed in Eastern Africa. In the longer term we expect to see further impact as the data are used to improve the health services, and hence the health of people in Eastern Africa. Finally over the longer term, this project will change the culture and environment towards population data on health.

In Phase 1 of the DIDA call the impact will be limited to building the foundation for the future data, and data processes. The real impact will come from the implementation of the network in Phase 2, which will see the improvements in the data, and the training of data managers, which will in turn lead to the longer term effects. However Phase 1 will provide the means to create the structure on which on the subsequent work will be built. It will provide the crucial foundation to the impact of the network. Even if Phase 2 of the GCRF - DIDA project did not happen, the structures would be there for another funding call.

The first impact will be on the data process used to manage data. Even in Phase 1 this will be seen through the use of data from one disease - HIV - which will be used as the model for the INSPIRE network. By incorporating the metadata into the shared databases, we will be able to bring greater understanding of the data provenance. This will enable us to build better quality into every step of the way. This impact will include the effect on personnel through training of data managers in the latest methods for building Big Data sets. In Phase 1 this will be limited to one data professional in APHRC, but in Phase 2 the impact will be seen in data personnel in every HDSS that joins the network.
The second impact will be in the use of the data. In Phase 1 we will start to use the HIV data to answer questions across Eastern Africa, which will highlight the findability, accessibility, interoperability and reusability of the data. In Phase 2 we will add other data into the network which will enhance the ways that the data can be used.

With the greater use of diverse data to inform policy, there will be better understanding of how to design health services to improve the health of people living in the community. By bringing the data together across Eastern Africa the opportunity to see how these services are accessed, and the effect these have on people's daily lives.

Ultimately this project will change the way we think about data, and how it can be used to inform decision making. This will go beyond the data in the INSPIRE network, but will encourage the sharing of data across disciplines. Population data provide the denominators needed to understand all Government services, and to show their impact on the lives of real people in Eastern Africa.