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Document
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PO-2100
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File #
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PA-010197-1
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Institution/HIC
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Ministry of Health and Long-Term Care
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Summary
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BACKGROUND: In 1996, the appellant, a medical researcher, sought access, under the Freedom of Information and Protection of Privacy Act (the Act ), to drug prescription data from the Ontario Drug Benefit (ODB) database, for the purpose of a drug utilization study. The ODB database is maintained by the Drug Programs Branch of the Ministry of Health and Long-Term Care (the Ministry). The appellant sought to link health card numbers of a certain group of patients to the ODB data. In early 1997, the Ministry decided to grant the appellant's request, and the Ministry and the appellant signed an agreement dated January 20, 1997 relating to the security and confidentiality of personal information (the agreement), as required by section 21(1)(e) of the Act and section 10 of Ontario Regulation 460 (the regulation) under the Act . (The signed agreement was provided to the appellant in March 1997). According to paragraph 1 of the agreement, the appellant was to use the data only for the following purpose: The data will be used in a pilot study to determine the drug utilization patterns of Mt. Sinai Hospital family medicine patients in order to investigate total drug burden, potential drug interactions and drug adverse effects, disease and utilization, and associations between drug prescribing and hospitalization. The agreement also stated the following (at paragraphs 1 and 5): This agreement is for a one-time feed only. A new agreement will be required for subsequent or future linkages. Upon receipt of the linkage, data analysis should be completed within a 6 month period. . . . . . The [appellant] will destroy all individual identifiers in the information by December 31, 1999. The data will be destroyed earlier if the research protocol permits. At the time the Ministry communicated its decision to grant access, the Ministry advised the appellant that "arrangements to gain access to the requested information should be made through the [Ministry's] Drug Program Branch. Please contact [named Ministry employee] at [specified telephone number]." The appellant states that he did in fact contact the named Ministry employee for the purpose of obtaining the ODB data, and sent him a list of health card numbers, on diskette. The appellant states that "work on data retrieval was subsequently begun by [two named Ministry employees] of the Ministry's Kingston office." However, the appellant never received any of the requested data from the Ministry. The appellant states that as a result of the unavailability of the data, he lost the financial support of a private sector sponsor for the drug utilization study. In 1999, the appellant received funding from Health Canada, a department of the federal government, for a proposed research project entitled "A Cohort Study of Air Quality and Utilization of Hospital Services" (the air pollution study). The purpose of the study was "to examine the effect of air pollution on respiratory and cardiac health." Subsequently, the appellant received approval for this study from the University of Toronto and McMaster University. In 1999, for the purpose of the air pollution study, the appellant sought access to the Ontario Hospital Insurance Plan (OHIP) and Canadian Institute for Health Information (CIHI) databases (both administered by the Ministry's Health Planning Branch). The appellant specifically sought claims and hospital discharge data from these sources. The Ministry decided to grant the appellant's request for access to the OHIP and CIHI databases, and the Ministry and the appellant signed an agreement relating to the security and confidentiality of personal information for this purpose. In 2000, the Ministry disclosed the OHIP and CIHI information to the appellant. In May 2000, the appellant wrote to the Ministry's Drug Programs Branch, indicating that he "once again had funding to support the [ODB] linkage, and wished once again to initiate the process" of access to the [ODB database]. The appellant states he did not receive a response from the Ministry despite repeated communications, and in August 2000 he wrote to the Minister complaining about the lack of response from the Ministry. Later in August 2000, the appellant wrote to the Ministry's Drug Programs Branch again seeking access to the ODB database for the purpose of the air pollution study and for another proposed study "for which funding applications are being submitted to the Heart and Stroke Foundation and to the Canadian Institutes of Health Research." The latter study concerned "prevention of stroke by management of risk factors such as high blood pressure, diabetes, and heart rhythm problems" (the stroke prevention study). The appellant enclosed with this letter a draft "Research and Confidentiality Agreement" between him and the Ministry regarding disclosure of ODB data for the air pollution and stroke prevention studies. Neither the appellant nor the Ministry ever signed this draft agreement. On December 8, 2000, the Ministry's Drug Programs Branch wrote to the appellant as follows: This is in regards to your request for the provision of [ODB] data for research purposes. As you are aware, the documentation pertaining to your request was forwarded to [the Ministry's] Legal Services [Branch] for review to ensure there are no confidentiality concerns prior to the release of data. We have been advised that a research agreement between the ministry and yourself would not be sufficient to allow for the release of ODB data for the purposes of conducting research as stated in sections 42(a) and 21(1)(e) under the [ Act ] as your request currently stands. Some of the concerns that were raised during the review include the following: that patient consent to disclose personal information was not obtained as part of the research protocol; that the use of an individual's OHIP number as part of this research study does not meet the provisions stated in the [ Health Cards and Numbers Control Act, 1991 ] i.e., health card numbers are intended to be used to obtain public health services and the collection of health card numbers for research purposes is not permitted unless designated in the Regulations; and there is a possibility that patients could be identified even if the personal identifiers are encrypted, due to matching of ODB data with other data provided by the ministry. As a result, we are unable to release the ODB data requested for your proposal as it is presently designed . . . The appellant responded to the Ministry's letter as follows: . . . Since you did not provide the rationale for your denial, allow me to address the specifics of the legislation that permit the approval of my request. You state that the release of this information is not permitted as "stated in sections 42(a) and 21(1)(e) under the [ Act ]. This is not correct. Section 21(1)(e) states that information may be released for a research purpose if, (i) the disclosure is consistent with the conditions or reasonable expectations of disclosure under which the personal information was provided, collected or obtained.
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Legislation
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Subject Index
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Signed by
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David Goodis
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Published
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Jan 17, 2003
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Type
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Order
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Information and Privacy Commissioner of Ontario. All Rights Reserved.
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