open access publication

Article, 2022

The life and death of confidentiality: a historical analysis of the flows of patient information

BioSocieties, ISSN 1745-8552, 1745-8560, Volume 18, 2, Pages 282-307, 10.1057/s41292-021-00269-x

Contributors

Wadmann, Sarah (Corresponding author) [1] Hartlev, Mette [2] Hoeyer, Klaus Lindgaard 0000-0002-2780-4784 [2]

Affiliations

  1. [1] Danish Center for Social Science Research
  2. [NORA names: VIVE The Danish Center for Social Science Research; Governmental Institutions; Denmark; Europe, EU; Nordic; OECD];
  3. [2] University of Copenhagen
  4. [NORA names: KU University of Copenhagen; University; Denmark; Europe, EU; Nordic; OECD]

Abstract

Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world’s most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a ‘zombie category’—a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data.

Keywords

Danish healthcare system, analysis, century, citizens' rights, concept, confidentiality, content, current political economy, data, data protection, death, doctors, documents, economy, flow, flow of patient information, health, health data, healthcare, healthcare professionals, healthcare system, historical analysis, history, idioms, information, information infrastructure, infrastructure, interest, issues, late seventeenth century, life, patient information, patient interest, patients, people, phenomenon, political documents, political economy, practice, practice of confidentiality, professionals, protection, reality, rights, sensitive information, seventeenth century, social phenomena, system, technocratic forms, technological reality, world, zombie, zombie concepts

Funders

  • European Research Council
  • European Commission

Data Provider: Digital Science