Privacy impact assessment in the design of transnational public health information systems: The BIRO project

Journal of Medical Ethics

Volumn 35, Issue 12, 2009, Pages 753-761

  Di Iorio, C T ^a   Carinci, F ^a   Azzopardi, J ^b   Baglioni, V ^c   Beck, P ^d   Cunningham, S ^e   Evripidou, A ^f   Leese, G ^e   Loevaas, K F ^g   Olympios, G ^f   Federici, M Orsini ^c   Pruna, S ^h   Palladino, P ^c   Skeie, S ^g   Taverner, P ^g   Traynor, V ^f   Benedetti, M Massi ^c  

^a Serectrix snc   (Italy)

^b UNIVERSITY OF MALTA   (Malta)

^c UNIVERSITY OF PERUGIA   (Italy)

^d JOANNEUM RESEARCH   (Austria)

^e UNIVERSITY OF DUNDEE   (United Kingdom)

^f NICOSIA GENERAL HOSPITAL   (Cyprus)

^g NOKLUS   (Norway)

^h National Institute for Diabetes C Paulescu   (Romania)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 72449185653     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2009.029918     Document Type: Article

References (34)

1. WHO European Ministerial Conference on Health Systems "Health Systems, Health and Wealth"; Tallinn, Estonia, 25-27 June 2008. The Tallinn charter: health systems for health and wealth. Copenhagen: World Health Organization Regional Office for Europe, 2008. http://www.euro.who.int/document/E91438.pdf (accessed 18 Sep 2009).
2. Davies S. Michael, Privacy and human rights [book review]. Web Journal of Current Legal Issues. Blackstone Press, 1995. http://webjcli.ncl.ac.uk/articles1/davies1.html (accessed 18 Sep 2009).
3. Warren S, Brandeis L. The right to privacy. Harv Law Rev 1890;4:193-220.
4. Calcutt D, et al. Report of the committee on privacy and related matters. London: Cmnd 1990:1102, 7.
5. European Commission, DG Health and Consumer Protection. List of projects funded in 2004-strand 1: health information. http://ec.europa.eu/health/ph_projects/2004/action1/action1_2004_sum_en.htm (accessed 18 Sep 2009).
6. Williamson OD, Cameron PA, McNeil JJ. Medical registry governance and patient privacy. Med J Aust 2004;181:125-6.
7. United Nations. The universal declaration of human rights. United National General Assembly resolution 217 A (III), 10 December 1948. http://www.un.org/en/documents/udhr/index.shtml (accessed 18 Sep 2009).
8. Office of the United Nations High Commissioner for Human Rights. International covenant on civil and political rights, adopted and opened for signature, ratification and accession by General Assembly resolution 2200A (XXI) of 16 December 1966, entry into force 23 March 1976, Art.17. http://www2.ohchr.org/english/law/ccpr.htm (accessed 18 Sep 2009).
9. Office of the United Nations High Commissioner for Human Rights. International convention on the protection of the rights of all migrant workers and members of their families, adopted by General Assembly resolution 45/158 of 18 December 1990, Art. 14. http://www2.ohchr.org/english/law/cmw.htm (accessed 18 Sep 2009).
10. Office of the United Nations High Commissioner for Human Rights. Convention on the rights of the child, adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November 1989, entry into force 2 September 1990, Art.16. http://www2.ohchr.org/english/law/crc.htm (accessed 18 Sep 2009).
11. Council of Europe. Convention for the protection of human rights and fundamental freedoms as amended by protocol no. 11 (ETS no. 005), Art.8, open for signature 4 November 1950, entry into force 3 September 1950. http://conventions.coe.int/Treaty/en/Treaties/Html/005.htm (accessed 18 Sep 2009).
12. Strossen N. Recent US and international judicial protection of individual rights: a comparative legal process analysis and proposed synthesis. Hastings Law J 1990;41:805-904.
13. Council of Europe. Convention for the protection of individuals with regard to automatic processing of personal data. Strasbourg: The Council, 1981. http://conventions.coe.int/Treaty/en/Treaties/Html/108.htm (accessed 18 Sep 2009).
14. Organisation for Economic Co-operation and Development, Directorate for Science, Technology and Industry. OECD guidelines governing the protection of privacy and transborder data flows of personal data. Paris: OECD, 1981. http://www.oecd.org/document/20/0,3343,en_2649_34255_15589524_1_1_1_1,00.html.
15. Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine. Oviedo: The Council, 1997. http://conventions.coe.int/Treaty/EN/Treaties/Html/164.htm (accessed 18 Sep 2009).
16. Council of Europe. Additional protocol to the convention on human rights and biomedicine, concerning biomedical research. Strasbourg: The Council, 2005. http://conventions.coe.int/Treaty/EN/Treaties/Html/195.htm (accessed 18 Sep 2009).
17. European Union. Treaty establishing a constitution for Europe. Official Journal of the European Union C 310, Vol 47, 16 Dec 2004. http://eur-lex.europa.eu/JOHtml.do?uri=OJ:C:2004:310:SOM:EN:HTML (accessed 18 Sep 2009).
18. European Commission. Charter of fundamental rights. (2000/C 364/01), Art.8. http://ec.europa.eu/justice_home/unit/charte/index_en.html (accessed 18 Sep 2009).
19. Ingelfinger JR, Drazen JM. Registry research and medical privacy. N Engl J Med 2004;350:1452-3.
20. Carinci F, Federici M, Benedetti M. Diabetes registers and prevention strategies: towards an active use of health information. Diabetes Res Clin Pract 2006;74:S215-9.
21. Carinci F, Rossi L. Statistical engine. WP 8, Final report. Perugia: BIRO Project, 2008. http://www.biro-project.eu/documents/downloads/D8_1%20Statistical_Engine.pdf (accessed 18 Sep 2009).
22. Stewart B. Privacy impact assessments. Privacy Law and Policy Reporter. PLPR 39. HiTech Editing Pty Ltd, 1996. http://www.austlii.edu.au/cgi-bin/disp.pl/au/journals/PLPR/1996/39.html (accessed 18 Sep 2009).
23. Linden Consulting, Inc. Privacy impact assessments: international study of their application and effects. Information Commissioner's Office, UK, Oct 2007. http:// www.ico.gov.uk/upload/documents/library/corporate/research_and_reports/ privacy_impact_assessment_international_study.011007.pdf (accessed 18 Sep 2009).
24. Flaherty DH. Privacy impact assessments: an essential tool for data protection. Privacy Law and Policy Reporter. PLPR 45. HiTech Editing Pty Ltd, 2000. http://www. austlii.edu.au/au/journals/PLPR/2000/45.html (accessed 18 Sep 2009).
25. Hope-Tindall P. Privacy impact assessment-obligation or opportunity: the choice is ours! CSE ITS Conference; 16 May 2002, Ottawa, Ontario. Data Privacy Partners Ltd, 2002.
26. Best Information Through Regional Outcomes (BIRO), Privacy Impact Assessment Team. Preliminary privacy impact assessment: report 1. WP5. Perugia: BIRO 2006. http://www.biro-project.eu/documents/downloads/D5_1%20Preliminary%20PIA%20Report.pdf (accessed 18 Sep 2009).
27. European Commission. Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data. Official Journal of the European Communities. L 281/31. http://ec.europa.eu/justice_home/fsj/privacy/ law/index_en.htm (accessed 18 Sep 2009).
28. McClelland R, et al. European standards on confidentiality and privacy in healthcare among vulnerable patient populations. Version 5.04. EuroSOCAP Project (2003- 2006). http://www.dataprotection.gov.sk/buxus/docs/eusocap_prirucka_stand.pdf (accessed 18 Sep 2009).
29. Van Doosselaere C, Herveg J, Silber D et al. Legally eHealth: putting eHealth in its European legal context. European Commission, 2008. European Commission: Contract # 30-CE-0041734/00-55, European Health Management Association. Legally eHealth. EC, 2006. (D.2 (PUB) 08, p 12.) http://www.ehma.org/files/Legally_eHealth-Del_02-Data_Protection.pdf (accessed 18 Sep 2009).
30. Council of Europe, Committee of Ministers. Recommendation No R (97) 5 of the committee of ministers to member states on the protection of medical data. CE, 1997. https://wcd.coe.int/com.instranet.InstraServlet?command=com.instranet.CmdBlobGet&InstranetImage=564487&SecMode=1&DocId=560582&Usage=2 (accessed 18 Sep 2009).
31. Adaji A, Schattner P, Jones K. The use of information technology to enhance diabetes management in primary care: a literature review. Inform Prim Care 2008;16:229-37.
32. Marshall MN, Shekelle PG, Leatherman S, et al. The public release of performance data: what do we expect to gain? A review of the evidence. JAMA 2000 283:1866-74.
33. Narins CR, Dozier AM, Ling FS, et al. The influence of public reporting of outcome data on medical decision making by physicians. Arch Intern Med 2005 165:83-7.
34. Guru V, Fremes SE, Naylor CD, et al. Public versus private institutional performance reporting: what is mandatory for quality improvement? Am Heart J 2006;152:573-8.