title: Cancer registration, public health and the reform of the European data protection framework: Abandoning or improving European public health research?
abstract: The importance of cancer- and other disease registries for planning, management and evaluation of healthcare systems has been shown repeatedly during the last 50 years. Complete and unbiased population-level analyses on routinely collected, individual data concerning health and personal characteristics can address significant concerns about risk factors for cancer and provide sound evidence about public health and the effectiveness of healthcare systems. The existence of quality controlled and comprehensive data in registries, allowed to be used for quality control, research and public health purposes are taken as granted by most health professionals and researchers. However, the current revision of the European Union (EU) data protection framework suggests a harmonisation of requirements for confidentiality and individual consent to data processing, likely at the expense of proper use of registry data in the health sector. Consequences of excessive confidentiality rules that may lead to missed data linkages have been simulated. The simulations provide one possible explanation for observed heterogeneity among some cancer incidence data. Further, public health, quality control and epidemiological research on large populations can no longer provide evidence for health interventions, if requirements for consent renders research impossible or where attempts to obtain consent from each data subject generates biased results. Health professionals should engage in the on-going debate on the Commission's proposal for a General Data Protection Regulation. The nature and use of registry data in public health research must be explained and known to policy-makers and the public. Use of cancer registry data and other epidemiological activity will terminate abruptly if an unnecessarily strict EU data protection regulation is adopted. Research based interventions, as well as the international recognised standing of cancer registries and register-based research institutions in Europe are at stake.
authors.affiliation: Danish Cancer Society, Cancer Prevention & Documentation, Strandboulevarden 49, DK 2100 Copenhagen, Denmark. Electronic address: mettera@cancer.dk.
authors.forename: Mette Rye
authors.initials: MR
authors.lastname: Andersen
authors.affiliation: Danish Cancer Society, Cancer Prevention & Documentation, Strandboulevarden 49, DK 2100 Copenhagen, Denmark.
authors.forename: Hans H
authors.initials: HH
authors.lastname: Storm
mesh_terms: D016494:Computer Security; D003219:Confidentiality; D016265:Conflict of Interest; D003625:Data Collection; D005060:Europe; D018166:Health Care Reform; D055991:Health Records, Personal; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D009369:Neoplasms / Q000453:epidemiology / Q000628:therapy; D011634:Public Health / Q000592:standards; D058996:Quality Improvement / Q000458:organization & administration*; D012042:Registries
keywords: Cancer registration; Cancer registry; Confidentiality; Consent; EU data protection; Epidemiology; Ethical guidelines; Public health