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The fall and rise of cancer registration in Estonia: The dangers of overzealous application of data protection.
Cancer Epidemiol. 2020 Jun; 66:101708.CE

Abstract

BACKGROUND

The population-based Estonian Cancer Registry (ECR) has maintained a database of cancer cases since 1968. Between 2001 and 2007 the ECR was prohibited from linking cancer records to death certificates. In January 2008, the prohibition was lifted, and two years later the ECR was able to begin tracing back unmatched deaths. This paper estimates the effect of the linkage ban on reported cancer incidence and survival.

METHODS

Incident cancers in 2001-2007 were extracted from the ECR database in May 2018 to allow for late registrations. Two datasets were created: one with all incident cases and another without death-certificate-initiated (DCI) cases. Using both datasets, age-standardised incidence rates (ASIR) and their ratios; age-standardised five-year relative survival ratios (ARSR) and excess mortality rate ratios were calculated.

RESULTS

In 2001-2007, 46,535 incident cancers were registered in the ECR. Of them, 2299 (4.9 %) were DCI cases. The inclusion of DCI cases increased the ASIR for overall cancer by 6 % in men and 3 % in women. An increase ≥10 % in ASIR for lung, liver and pancreatic cancer was observed. The effect of accrued DCI cases to the ARSR was minor. Excess mortality in the dataset without DCI cases was 4 % underestimated in men and 3 % in women.

CONCLUSION

Biases in cancer incidence and survival measures generated by the temporary record linkage ban were largely correctable by using trace-back procedures when this became possible. Nevertheless, this type of ban and the arguments put forward to justify it, harm disease registration and register-based research.

Authors+Show Affiliations

Department of Epidemiology and Biostatistics, National Institute for Health Development, Tallinn, Estonia. Electronic address: kaja.rahu@tai.ee.Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom.Estonian Cancer Registry, National Institute for Health Development, Tallinn, Estonia.Department of Epidemiology and Biostatistics, National Institute for Health Development, Tallinn, Estonia.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

32446217

Citation

Rahu, Kaja, et al. "The Fall and Rise of Cancer Registration in Estonia: the Dangers of Overzealous Application of Data Protection." Cancer Epidemiology, vol. 66, 2020, p. 101708.
Rahu K, McKee M, Mägi M, et al. The fall and rise of cancer registration in Estonia: The dangers of overzealous application of data protection. Cancer Epidemiol. 2020;66:101708.
Rahu, K., McKee, M., Mägi, M., & Rahu, M. (2020). The fall and rise of cancer registration in Estonia: The dangers of overzealous application of data protection. Cancer Epidemiology, 66, 101708. https://doi.org/10.1016/j.canep.2020.101708
Rahu K, et al. The Fall and Rise of Cancer Registration in Estonia: the Dangers of Overzealous Application of Data Protection. Cancer Epidemiol. 2020;66:101708. PubMed PMID: 32446217.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - The fall and rise of cancer registration in Estonia: The dangers of overzealous application of data protection. AU - Rahu,Kaja, AU - McKee,Martin, AU - Mägi,Margit, AU - Rahu,Mati, Y1 - 2020/05/20/ PY - 2020/01/10/received PY - 2020/03/17/revised PY - 2020/03/18/accepted PY - 2020/5/24/pubmed PY - 2020/5/24/medline PY - 2020/5/24/entrez KW - Cancer registration KW - Data protection KW - Data quality KW - Death-certificate-initiated case KW - Excess mortality KW - Incidence rate KW - Rate ratio KW - Record linkage KW - Relative survival ratio SP - 101708 EP - 101708 JF - Cancer epidemiology JO - Cancer Epidemiol VL - 66 N2 - BACKGROUND: The population-based Estonian Cancer Registry (ECR) has maintained a database of cancer cases since 1968. Between 2001 and 2007 the ECR was prohibited from linking cancer records to death certificates. In January 2008, the prohibition was lifted, and two years later the ECR was able to begin tracing back unmatched deaths. This paper estimates the effect of the linkage ban on reported cancer incidence and survival. METHODS: Incident cancers in 2001-2007 were extracted from the ECR database in May 2018 to allow for late registrations. Two datasets were created: one with all incident cases and another without death-certificate-initiated (DCI) cases. Using both datasets, age-standardised incidence rates (ASIR) and their ratios; age-standardised five-year relative survival ratios (ARSR) and excess mortality rate ratios were calculated. RESULTS: In 2001-2007, 46,535 incident cancers were registered in the ECR. Of them, 2299 (4.9 %) were DCI cases. The inclusion of DCI cases increased the ASIR for overall cancer by 6 % in men and 3 % in women. An increase ≥10 % in ASIR for lung, liver and pancreatic cancer was observed. The effect of accrued DCI cases to the ARSR was minor. Excess mortality in the dataset without DCI cases was 4 % underestimated in men and 3 % in women. CONCLUSION: Biases in cancer incidence and survival measures generated by the temporary record linkage ban were largely correctable by using trace-back procedures when this became possible. Nevertheless, this type of ban and the arguments put forward to justify it, harm disease registration and register-based research. SN - 1877-783X UR - https://www.unboundmedicine.com/medline/citation/32446217/The_fall_and_rise_of_cancer_registration_in_Estonia:_The_dangers_of_overzealous_application_of_data_protection L2 - https://linkinghub.elsevier.com/retrieve/pii/S1877-7821(20)30042-4 DB - PRIME DP - Unbound Medicine ER -
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