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

Authors: Titti Mattsson

Addresses: Faculty of Law, Lund University, Sweden

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.

Keywords: quality registries; incapacitated persons; dementia; privacy protection; privacy preservation; confidentiality; medical records; legal protection of elderly; aging population; clinical evaluations; patient data; decision making capacity; data collection; quality improvement; Sweden; healthcare quality; individual patient rights; demographics; cognitive impairment; valid consent; research evaluation; common good.

DOI: 10.1504/IJTPL.2016.077174

International Journal of Technology Policy and Law, 2016 Vol.2 No.2/3/4, pp.160 - 168

Published online: 22 Jun 2016 *

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