Protecting Data Privacy in Health Services Research (2000) / Chapter Skim
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Appendix D Confidentiality of Health Information: International Comparative Approaches
Appendix D Confidentiality of Health Information: International Comparative Approaches
Pages 173-186
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From page 173... ...
It has seen a movement towards greater patient as opposed to professional control of health information. Finally, the recent appearance of personal data protection laws not only shields the individual from the powers of informatics but also provides a measure of security and personal control.
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From page 174... ...
Although the right to privacy was further strengthened by its inclusion in the 1976 United Nations International Covenant on Civil and Political Rights, it was both the Council of Europe's 1981 Convention for the Protection of Individuals with Regard to the Automatic Processing of Data which considered health data as "special", and the Organization for Economic Cooperation and Development (OECD's) 1989 Gaidelines for the Protection of Privacy and Transborder Flows that established the modern parameters for the principled regulation and security of medical data.
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From page 175... ...
25.1~. The processing of health data is not distinguished from that of other personal data but the exemptions provided for under article 8 are certainly relevant: Where processing of the data is required for the purposes of preventive medicine, medical diagnosis, the provision of care or treatment or the management of health care services, and where those data are processed by a health professional subject under national law or rules established by national competent bodies subject to the obligation of professional secrecy or by another person also subject to an equivalent obligation of secrecy.
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From page 176... ...
enforcement rights for individuals. Nevertheless, a recent study for the OECD on "Data Protection in Trans-Border Flows of Health Research Data," while supportive of self-regulatory codes of conduct (especially where there is scrutiny by a data protection authority and eligibility for Findings, emphasizes the need for more consolidation.4 Within the area of sensitive data, health information is increasingly being singled out as being in need of specific statutory protection in spite of the application of the four core principles through a web of legal instruments.
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From page 177... ...
Personal health information: Any personal information relating to the physical or mental health of any person from which that person can be identified. Anonymized information: Information, which does not, directly or indirectly, identify the person to whom it relates.
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From page 178... ...
Recently, the Medical Research Council Key Principle B maintained: When consent is impracticable, confidential information can be disclosed for medical research without consent if it is justified by the importance of the study; if there is no intention to contact individuals (except to seek consent) or reveal findings to them, if there are no practicable alternatives of equal effectiveness; and if the infringement of confidentiality is kept to a minimums With regard to this principle, the document notes that the "decision about whether a study is sufficiently important is not for the investigator alone, but must also be referred to a Local Research Ethics Committee for independent assessment." The techniques required for the use of personal health information in research are encoding or anonymization "so far as is reasonably possible." Anonymized data is understood as the equivalent of unidentifiable data, that are, all information that could directly identify individuals has been irreversibly removed.
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From page 179... ...
It establishes the fundamental pr~nciple related to data protection, including special provisions related to the use of identifiable personal information in medical research.~4 The Guidelines for the Protection of Privacy in the Conduct of Medical Research of the National Health and Medical Research Council (1998) not only require that each research project be approved by an institutional ethics committee but also require the following: 2.3 The written protocol for the conduct of each medical research project should state: (d)
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From page 180... ...
In a major statutory amendment in 1994 to the French omnibus data protection law, French legislators set out restrictions on the automatic treatment of personal information for the purpose of health care research. This statute sets up a new body of data protection oversight, establishes substantive principles for data protection in medical research, and specifies important individual interests that must be respected before personal information can be used in a health care research project." Each request to process information for medical research is to be submitted first to the Consultative Committee on the Treatment of Information in Research Health Care sector of experts, who are then to notify the National Commission on Information and Liberties (CNIL)
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From page 181... ...
In addition, adopting heightened security measures for medical data, the CNIL can at any time verify the respect of these conditions. Yet, the commission affirmed that in conformity with article 5 of the 1981 Convention on the Automatic Processing of Data access to nominative medical data for proper followup and the inclusion of such data for purposes of state social security programs, for prevention strategies, or for statistics or research were not precluded provided there is coding or anonymization.
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From page 182... ...
In a recent case involving counselling records, the Supreme Court of Canada confirmed that section 8 of the Canadian Charter of Rights and Freedoms provides protection for such confidential information and indirectly for the therapeutic relationship.27 In another case under the Charter, where a body sample taken without consent or for medical purposes was used in criminal pro2~Advisory Council on Health Infrastructure, Canada Health Infoway: Paths to Better Health, Final Report (Health Canada Reports, February 1999) , Chapter 1 at 5.2, 5.3.
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From page 183... ...
Both the Charter and the Civil Code cover governmental as well as private action. The protection of personal information as well as access by the person is further enshrined not only in two statutes covering personal data in both the public and the private sectors29 but also by the Act Respecting Health Services and Social Services.30 The latter further buttresses the confidentiality of health information by requiring an explicit consent from the patient for access (art.
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From page 184... ...
Since one of the aims of the research in question was to find the cause of susceptibility to manic depression and schizophrenia, the researcher needed access to the records for the purposes of familial recruitment.35 Iceland On December 17, 1998, the Icelandic Parliament adopted an Act on a Health Sector Database, (Act 139/1998~.36 This act foresees the creation and operation of a centralized database containing nonpersonally identifiable clinical data. Companies can apply for a license to have access.
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From page 185... ...
Article 10 of the act states that the licensee is permitted to process the clinical data in the Health Sector Database derived from medical records, provided the data are processed and connected in such a way that they cannot be linked to identifiable individuals. The article provides, furthermore, that the licensee shall develop methods and protocols that meet the requirements of the Data Protection Commission in order to ensure confidentiality in connecting data from the Health Sector Database with data from a genealogical database and a genetic database.
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From page 186... ...
Moreover, most countries also provide for recourse to overarching constitutional protection, or in the absence of such, to human rights legislation be it national or regional as in Europe. Such consolidation and clarification including the ambit of legitimate exceptions would not only be welcome but perhaps serve as a first step towards an international "charter" on health information.
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