The Tyranny of Numbers: How e-Health Record Transparency Affects Patients’ Health Perceptions and Conversations with Physicians

Abstract

All Danish adults have access to their electronic medical records on the e-health platform Sundhed.dk, which is intended as a means to empower patients. But what happens when patients see their paraclinical test results presented as numbers which are flagged as either ‘normal’ or ‘abnormal’? Based on fieldwork in general practices and consultations, and on observations of individuals living with chronic illnesses, we investigated how patients and physicians interpret and interact with such numerical values, creating, as we argue through the words of Gregory Bateson, ‘epistemological errors’. We show how health record transparency blurs the patient’s senses and understanding and makes it harder for them to interpret their state of health and to trust the clinical judgement of health professionals. We argue that the immediate access to test results triggers a runaway process in which numerical values (be they normal or abnormal in comparison with a standard point of reference) transform into a threat to life itself. As such, our ethnography underlines the intricate contradiction between the trust placed in biomedical sciences and the uncertainty involved in testing, diagnosing, and treating. Patients’ access to all test results leads to a quest for certainty—one never fully obtainable, which thus instead mobilises new uncertainties.