Accepted Paper:

Patient, population and back: accounting for patient data in Denmark   

Author:

Klaus Hoeyer (University of Copenhagen)

Paper short abstract:

Drawing on policy analysis and interviews with clinicians, researchers and administrators in Denmark as well as with patients enrolled in research based on their registered data, I explore what comes to be counted, and what comes to count, when developing the data infrastructure of the Danish health services.

Paper long abstract:

Patients leave behind increasing amounts of healthcare data and biological samples every time they use the health services. Such data can be combined with data from self-tracking devices and mobile phones indicating physical location, as well as data on socio-economic status, school performance, cognitive tests, and data on employment from employers and tax authorities. Based on the accumulated data, in the form of population aggregates used to establish clinical guidelines and preventive advice, data can subsequently be used to guide individuals as well as for planning in the health services. What drives the data circle from patient to population and back? Drawing on policy analysis and interviews with clinicians, researchers and administrators in Denmark as well as with patients enrolled in research based on their registered data, I explore what comes to be counted, and what comes to count, when developing the data infrastructure of the Danish health services.

Panel T137
From person to population and back: exploring accountability in public health