Collecting data for quality improvement and research in Swedish healthcare, and the individual patient's right and ability to protect their privacy

Research output: Contribution to journalArticlepeer-review

Abstract

During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and systematic improvement studies? This paper discusses the tension between the need that also people with limited or no decision-making capacity participate in research and clinical evaluations, and the difficulty in ensuring the privacy of the incapacitated to the same degree that others enjoy. I will argue that Sweden has chosen to put the common good above the individual’s privacy, and therefore have accepted a certain weakening of the incapacitated persons’ privacy protection.
Original languageEnglish
Pages (from-to)160
Number of pages168
JournalInternational journal of technology policy and law
Volume2
Issue number2/3/4
Publication statusPublished - 2016

Subject classification (UKÄ)

  • Law

Keywords

  • social welfare law
  • incapacited persons
  • quality registries
  • dementia
  • patient data
  • decision-making capacity
  • elderly
  • aging population
  • medical records
  • research
  • privacy protection
  • clinical evaluations
  • confidentiality

Fingerprint

Dive into the research topics of 'Collecting data for quality improvement and research in Swedish healthcare, and the individual patient's right and ability to protect their privacy'. Together they form a unique fingerprint.

Cite this