ON PSEUDONYMOUS HEALTH REGISTERS - While they Work as Intended, they are Still Controversial in Norway

Herbjørn Andresen

Abstract

Patient health data has a valuable potential for secondary use, such as decision support on a national level, reimbursement settlements, and research on public health or on the effects of various treatment methods. Unfortunately, extensive secondary use of data is very likely to have disproportionate negative impact on the patients’ privacy. Traditionally, privacy regulations require a balancing process; the use of data should be minimized and kept within a level where proportionate privacy is maintained. An alternative strategy is to use technological remedies to enhance privacy protection. Norwegian health data processing regulation prescribes four different ways of organising health registers (anonymous, de-identified, pseudonymous or fully identified data subjects). Pseudonymity is the most innovative of these methods, and it has been available as a legitimate means to achieve extensive secondary use of accurate and detailed data since 2001. Up to now, two different national health registers have been organised this way. The evidence from these experiences should be encouraging: Pseudonymity works as intended. Yet, there is still discernible reluctance against extending the pseudonymity principle to encompass other national health registers as well.

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Paper Citation


in Harvard Style

Andresen H. (2008). ON PSEUDONYMOUS HEALTH REGISTERS - While they Work as Intended, they are Still Controversial in Norway . In Proceedings of the First International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2008) ISBN 978-989-8111-16-6, pages 59-66. DOI: 10.5220/0001039100590066


in Bibtex Style

@conference{healthinf08,
author={Herbjørn Andresen},
title={ON PSEUDONYMOUS HEALTH REGISTERS - While they Work as Intended, they are Still Controversial in Norway},
booktitle={Proceedings of the First International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2008)},
year={2008},
pages={59-66},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0001039100590066},
isbn={978-989-8111-16-6},
}


in EndNote Style

TY - CONF
JO - Proceedings of the First International Conference on Health Informatics - Volume 1: HEALTHINF, (BIOSTEC 2008)
TI - ON PSEUDONYMOUS HEALTH REGISTERS - While they Work as Intended, they are Still Controversial in Norway
SN - 978-989-8111-16-6
AU - Andresen H.
PY - 2008
SP - 59
EP - 66
DO - 10.5220/0001039100590066