ABSTRACT
Public health data that is reliable is the foundation through which the understanding of healthcare delivery around the world is based on. Data helps guide decision-making right from programme implementation level to Global coordination levels as well as policy design, funding and research. Quality, reliable and consistent data monitoring is essential to assess any public health programme which most countries lack due to inadequate health information systems.
The WHO pegs the number of children born with sickle cell disease (SCD) every year globally at 300,000 (Michael & Najibah, 2022), 90% per cent of which live in three countries (Nigeria, the Democratic republic of Congo and India). Two of these countries are located in Sub-Saharan Africa (Michael & Najibah, 2022).
SCD occurs as a result haemoglobin disorder inherited from both parents which varies by genotype depending on the abnormal type of haemoglobin involved and is a prevalent cause of child mortality. Although the proportion of persons living with the disease and number of persons carrying the sickle cell trait are prevalent in Sub-Saharan Africa, there is paucity of data in almost every aspect relating to SCD for this part of the continent.
The world health statistics complied annually by the WHO since 2005 is one of the most comprehensive compilation of world health data for 196 countries and also surprisingly does not capture data on SCD. In addition, review of data spanning two decades for new born screening in the United States revealed a sparsity in published information on the frequency of SCD amongst US birth (Therrell et al., 2015).
Another study conducted in South Africa that looked at available data sources for monitoring non-communicable diseases (NCDs) and their risk factors showed a weakness in routine data collection for NCDs and also poor quality of data (Wandai et al., 2017).
This chapter will serve to highlight the gap in data availability and accessibility for all aspects of SCD in Sub-Saharan Africa, its implications and the challenges it poses for public health programming now and in the future.
The chapter is divided into three parts: the first part will illustrate the lack of data at the global level, then the second part will look at what applies in Sub-Saharan Africa using the National Demographic health surveys and the third part will look at the last part will pull it all together and outline areas and ways in which data will help health promotion, sickle cell awareness and management of the disease and ultimately a reduction in early childhood mortality as a result of the disease. The different dimensions of data that needs to be collected and documented and how sickle cell focused organizations/NGOs, government and other stakeholders can improve access and availability of SCD data for future programming and the need to have national data collection tools and technical working groups focused on sickle cell for progress in this area.
