12. Health Intelligence Systems and Security

The COVID-19 crisis exposed critical gaps in how information systems are managed by different agencies and how results are communicated to decision makers and to the public. Information systems managed by government institutions in high income countries like the United Kingdom collect detailed, individual level data directly from health providers, and typically have legal provisions that permit them to utilize the data flexibly to advise governments. However, such publicly collected data are often (a) obtained on an ad hoc basis with inconsistencies across different aspects of health, (b) processed manually and (c) reported in multiple overlapping ways by different agencies to government and the public with substantial delays and inaccuracies. This leaves countries vulnerable both to under-informed decision making and poor democratic oversight by the public. This issue has likely been made worse by the need for very rapid decision making by governments under significant pressure. Although many technical solutions to these data limitations exist, they remain within systems of publicly provided services that are incentivized to protect and replicate pre-existing processes and are sometimes directed by medical professionals rather than data science experts. This pattern of data assembly and analysis will almost inevitably compromise the scientific integrity and timeliness of the evidence presented to decision makers and the public. However, in characterizing these patterns it may be possible to consider more efficient health intelligence systems alternatives. This chapter will explore these issues by looking at health data agencies in the UK and will discuss mortuary planning in London during COVID-19 as a case-study to illustrate them. Although drawing on UK examples, the purpose of this chapter is to demonstrate the impact of technical aspects of health data on the transparency and accountability of governments in general.