Power and politics of health system data: how data shape responses and equity during pandemics

Abstract

Abstract Background Pandemics disproportionately affect vulnerable groups. There are documented socioeconomic, gendered, and racialized differences in the burden of disease during COVID-19 and previous pandemics due to factors such as lack of access to social safety nets, poor quality of housing, and precarious working conditions. Therefore, equity should be a key principle for health system preparedness. However, the monitoring and detection of inequities largely depend on the availability of disaggregated data. Often, such data are not available nor are they utilized to promote equity-based approaches during major public health crises. Methods The article builds on social epidemiology and is conducted as a theoretical review. It uses health monitoring data collected in the Finnish health system and the Finnish response to COVID-19 as case studies to investigate how data shape equity and responses during rapidly unfolding crises. Finland provides an interesting context for the case studies due to its extensive and high-quality health registers and health monitoring data. Results In the article, we present a summary of the Finnish health system monitoring data infrastructure and a review of factors affecting data collection and utilization processes in Finland. We then describe how register data was utilized as a part of the Finnish response to COVID-19. Finally, we present an example of how the utilization of disaggregated vaccination coverage data helped create an equity-based community health promotion response during COVID-19 in Finland. Conclusions The article points out several understudied populations in the Finnish health system monitoring infrastructure, including those with lower incomes, undocumented immigrants, racialized minorities, and LGBT populations. While waiting for national health monitoring systems to “catch up”, smaller-scale community-based responses can be used to tackle inequities during health system crises. Key messages • Critical research approaches to health system data and data gaps are crucial since these data are the product of decisions, prioritization and value judgments made by health system actors themselves. • Revision work of pandemic preparedness plans across Europe needs to acknowledge how health system monitoring shape both responses and equity during crises.