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Protocol for Requesting Access to Personal Information in a Queen’s University Record for a Research Purpose

Authority

Queen’s University will comply with section 21(1)(e) of the (“FIPPA”) which authorizes the disclosure of personal information 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,

(ii) the research purpose for which the disclosure is to be made cannot be reasonably accomplished unless the information is provided in individually identifiable form, and

(iii) the person who is to receive the record has agreed to comply with the conditions relating to security and confidentiality prescribed by the regulations. [See .]

Requests for access to personal information in University records will be handled as formal FIPPA requests through the Records Management and Privacy Office.  Note: Requests for access to University records that have been placed in the Queen’s University Archives will be coordinated by the .

Procedures

1. Researchers wishing to use operational University records containing personal information for a research purpose will first consult with the University office responsible for the records to determine whether the records can be anonymized. If so, the researcher can liaise with the responsible office and is not required to submit a formal FIPPA request. Note: University offices may wish to consult with the Records Management and Privacy Office if there is any concern about the anonymization.

2. If anonymization is not possible, researchers will consult with the Records Management and Privacy Office in order to discuss the project and submit a formal FIPPA request for access to the records.

3. As part of the request, the researcher will be asked to complete the Research Agreement template which will include a description of the research project, a rationale for using records in personally identifiable form, a detailed list of records to be consulted, and assurances that the records will be treated securely and confidentially. The Director, University Records Management and Chief Privacy Officer will deliberate on the merits of the application, consulting other offices within the University as appropriate. The final decision on access to records will be made by the designated decision-maker as outlined in the FIPPA Delegation of Authority.

4. Researchers who are granted access to personal information for a research purpose will be able to access the requested records for a period of two years.

Protocol for Requesting Access to Personal Health Information in a Queen’s University Record for a Research Purpose

 Protocol for Requesting Access to Personal Health Information in a ���˴�Ƭ Record for a Research Purpose (PDF, 189 KB)

The Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans—known as —requires the approval of a Research Ethics Board (REB) for secondary use of information for a research purpose. Secondary use means using information collected originally for a purpose other than the current research purpose, such as records created for administration or operations, or records created for a different research project. Article 5.5 requires that REB approval be sought for the secondary use of both identifiable information and de-identified/anonymized information. Article 5.5A specifically permits the use of identifiable information without consent under certain circumstances.

Personal health information is, by definition, identifiable information. (If information is not identifiable (e.g., if it has been de-identified or anonymized), then it is not personal health information and this protocol does not apply.) The Personal Health Information Protection Act (“PHIPA”) permits the disclosure of personal health information by a Health Information Custodian, or HIC, for a research purpose in situations where it is impractical for the researcher to seek consent from the individuals to whom the information relates.

In accordance with section 44(1) of PHIPA, Queen’s University’s HICs (see Schedule A below) may authorize disclosure of personal health information for a research purpose if the researcher:

1. submits to the University:
   • an application in writing,
   • a research plan that meets the requirements of section 44(2) of PHIPA, and
   • a copy of the decision of a research ethics board that approves the research plan; and
2. enters into the agreement required by section 44(5).

The flow chart below outlines the process for accessing records containing personal health information from a Queen’s University HIC. Researchers with a connection to Queen’s University will follow the normal process for approval through a research ethics board with the goal of obtaining a data transfer agreement. Researchers without a connection to Queen’s University will apply through the University’s Privacy Office with the goal of obtaining a research agreement.

Access to records containing personal health information that have been transferred to the Queen’s University Archives will be coordinated by the University Archivist.

N.B. Requests from individuals for access to their own PHI can be treated in accordance with normal unit access procedures or as a FIPPA request through the Records Management and Privacy Office.

Procedure

Schedule A: Queen’s University Health Information Custodians (HICs)