Anna Essén

Performance metrics have become widely used and much lamented - about tools for measuring healthcare quality. In this paper, the authors reflect on the development and use of performance metrics in healthcare regulation and clinical practice. Studying multi-actor settings of performance measurement systems in healthcare in Sweden and the Netherlands, the authors show how regulatory agencies (i.e., the inspectorate and national registries), patients, hospitals, and practitioners engage in the constitution of healthcare practices through developing performance indicators that form the input for ranking, ensuing intensive dialogues on what should be measured and accounted for, and to what effects. The authors analyze this process as caring for numbers. The authors discern two practices of caring for numbers: validating and contexting. Validating refers to the practices of making numbers reflect those practices they intend to depict; contexting is about how with the use of numbers specific contexts of healthcare are built. These processes together emphasize the performative character of numbers as well as the reflexive uses of performativity. The paper shows how collaborative and rather pragmatic practices of caring for numbers co-construct specific practices of healthcare. Though this reflexive entanglement of production and use of numbers actors not only constitute specific performance metrics and ranking practices but also perform healthcare.

The availability of health data for learning on a global scale seems to be what most actors engaged in the digitalization of society would like to see. Different views regarding how to achieve this state of affairs are, however, emerging. In an attempt to stimulate a discussion on alternative paths forward, this chapter juxtaposes the governance arrangement of today’s state-based health information exchanges (HIEs) with that of a potential decentralized (blockchain-based) HIE scenario. Based on interviews with individuals involved in the health care field, we outline some questions regarding the ability of current HIEs as well as completely decentralized (blockchain-based) infrastructures to enable the desired level of global data exchange. We conclude that a combination of decentralization and new forms of centralization will characterize the infrastructures of the future, be they blockchain based or not. Much effort will be required to reach agreement regarding how these infrastructures and governance models will best serve the interests of individuals, society, and humanity alike.