Big Data and Ethics Review for Health Systems Research in LMICs: Understanding Risk, Uncertainty and Ignorance—And Catching the Black Swans?

Health systems research (HSR) is an indispensable compass to steer development policy and diplomacy in 21st century knowledge societies (Kickbusch and Kökény 2013; Özdemir 2013; Özdemir et al. 2013). The World Health Organization (WHO) defines HSR as “the purposeful generation of knowledge that enables societies to organize themselves to improve health outcomes and health services” (World Health Organization 2009). Traditional clinical trials and academic research are situated proximal on the “lab to society” translation continuum, for example, for discovery of new therapeutics. In contrast, HSR engages with the knowledge trajectory in its distal end, by examining and organizing health services and public health infrastructures. HSR data can also help select rational targets for investments in health attuned to community values in lowand middleincome countries (LMICs); these investments have reached nearly $28 billion in global health by 2011 (Leach-Kemon et al. 2012). Today HSR is a real-world and systems-oriented large-scale activity with cross-cutting social, economic, and