Korean Journal of Head & Neck Oncology (대한두경부종양학회지)

The Korean Society for Head and Neck Oncology (대한두경부종양학회)
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Strategies of Cancer Registry against Protecting Personal Health Data

개인 정보 보호에 대한 암 등록 사업의 해결 방안

  • Park, Bum-Jung (Department of Otothinolaryngology-Head and Neck Surgery, College of Medicine, Hallym University) ;
  • Joo, Hyung-Rho (Department of Otothinolaryngology-Head and Neck Surgery, College of Medicine, Hallym University) ;
  • Park, Il-Seok (Department of Otothinolaryngology-Head and Neck Surgery, College of Medicine, Hallym University) ;
  • Kim, Jin-Whan (Department of Otothinolaryngology-Head and Neck Surgery, College of Medicine, Hallym University) ;
  • Rho, Young-Soo (Department of Otothinolaryngology-Head and Neck Surgery, College of Medicine, Hallym University)
  • 박범정 (한림대학교 의과대학 이비인후-두경부외과학교실) ;
  • 주형로 (한림대학교 의과대학 이비인후-두경부외과학교실) ;
  • 박일석 (한림대학교 의과대학 이비인후-두경부외과학교실) ;
  • 김진환 (한림대학교 의과대학 이비인후-두경부외과학교실) ;
  • 노영수 (한림대학교 의과대학 이비인후-두경부외과학교실)
  • Published : 2007.11.30
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Abstract

Objectives and Background : Aims of this studies are to collect and analyze the lawful restriction against cancer registration and to suggest the model promoting the cancer registry. Materials and Methods : Total 16 countries, the members of OECD, including the U.S. are evaluated. the status of cancer registration of the evaluated countries are analyzed. The legislated laws, protect the individual's information, of the evaluated countries are analyzed. The cases any registries were impaired with the law to protect privacy are searched and analyzed. Results : All of the evaluated countries have some kinds of privacy protecting laws. For cancer registration, 11 of 16 countries implement some lawful authorities. Some of countries have experienced restriction of registration by the law of protecting individual's health data. All countries have performed cancer registry and 6 of 16 countries have nearly 100% population-based cancer registration. Conclusions : The cancer registry has to be the national effort. The informed consent of the data subjects and the permission of any special institutes are the difference to perform the registration. So, it is necessary to legislate any law supporting the cancer registration and establish any independent institutes to protect the individual's health data and support the cancer registry.

Keywords

References

  1. Swan J, Wingo P, Clive R, et al: Cancer surveillance in the U.S. Cancer. 1998;83:1282-1291 https://doi.org/10.1002/(SICI)1097-0142(19981001)83:7<1282::AID-CNCR3>3.0.CO;2-L
  2. Micheli A, Coebergh JW, Massimiliani E, et al: European health systems and cancer care. Ann Oncol. 2003;14:41-60 https://doi.org/10.1093/annonc/mdg753
  3. Coleman MP, Gatta G, Verdecchia A, et al: EUROCARE-3 summary: Cancer survival in Europe at the end of the 20th century. Ann Oncol. 2003;14:128-149 https://doi.org/10.1093/annonc/mdg756
  4. SEER's training web site: available at:http://training.seer.cancer. gov/module_cancer_registration/unit1_registry_registration.html
  5. 통계청. 2003 사망원인통계연보
  6. Organisation for Economic Co-operation and Development: OECD guidelines on the protection of privacy and transborder flows of personal data. available at: http://www.oecd.org/documentprint /0,2744, en_2649_201185_1815186_1_1_1_1,00.html
  7. Health Insurance Portability and Accountability Act of 1996. Pub. L. No. 104-191, 110 Stat 1936, 1996
  8. European standards on confidentiality and privacy in healthcare among vulnerable patients populations
  9. Ingelfinger JR, Drazen JM: Registry research and medical privacy. N Engl J Med. 2004;350:1452-1453 https://doi.org/10.1056/NEJMe048027
  10. Chertow GM, Pascual MT, Soroko S, et al: Reasons for non-enrollment in a cohort study of ARF: The program to improve care in acute renal disease(PICARD) experience and implications for a clinical trials network. Am J Kidney Dis. 2003;45:507-512
  11. Tu JV, Willison DJ, Silver FL, et al: Impracticability of informed consent in the registry of the Canadian stroke network. N Engl J Med. 2004;350:1414-1421 https://doi.org/10.1056/NEJMsa031697
  12. Gunn PP, Fremont AM, Bottrell M, Shugarman LR, Galegher J, Bikson T: The health insurance portability and accountability act privacy rule, A practical guide for researchers. Medical Care. 2004;42:321-327 https://doi.org/10.1097/01.mlr.0000119578.94846.f2
  13. Pace WD, Staton EW, Hocomb S: Practice-based research network studies in the age of HIPAA. Ann Fam Med. 2005;3:38-45 https://doi.org/10.1370/afm.273
  14. Verity C, Nicoll A: Consent, confidentiality, and the threat to public health surveillance. BMJ. 2002;18:1210-1213
  15. Vates JR, Hetrick JLR, Lavin KL, Sharma GK, Wagner RL, Johnson JT: Protecting medical record information: Start your research registries today. Laryngoscope. 2005;115:441-444 https://doi.org/10.1097/01.mlg.0000157829.00509.e9
  16. Paterson ICM: Consent to cancer registration-an unnecessary burden. BMJ. 2001;322:1130
  17. Gavin AT, Fitzpatrick D, Middleton RJ, Coleman MP: Patients' denial of disease may pose difficulty for achieving informed consent. BMJ. 2002;324:974 https://doi.org/10.1136/bmj.324.7343.974
  18. Hussong SJ: Medical records and your privacy: Developing federal legislation to protect patient privacy rights. AJLM. 2000;26:453-474
  19. Dodek DY, Dodek A: From Hippocrates to facsimile: Protecting patient confidentiality is more difficult and more important than ever before. Can Med Assoc J. 1997;156:847-852
  20. European network of cancer registries: Newsflash. 2005 March. available at: http://www.encr.com.fr/flash14_en.pdf