Research ArticleResearch

Ethics and privacy issues of a practice-based surveillance system

Need for a national-level institutional research ethics board and consent standards

Jyoti A. Kotecha, Donna Manca, Anita Lambert-Lanning, Karim Keshavjee, Neil Drummond, Marshall Godwin, Michelle Greiver, Wayne Putnam, Marie-Thérèse Lussier and Richard Birtwhistle
Canadian Family Physician October 2011; 57 (10) 1165-1173;

Article Figures & Data

Figures

  • Figure 1.
    Figure 1.

    Map of regionally applicable privacy acts across Canada

    ATIPPA—Access to Information and Protection Privacy Act, FIPPA—Freedom of Information and Protection of Privacy Act, FOIP—Local Freedom of Information and Protection of Privacy Act, HIA—Health Information Act, HIPA—Health Information Protection Act, PHIA—Personal Health Information Act, PHIPA—Personal Health Information Protection Act, PIPA—Personal Information Protection Act, MFIPPA—Municipal Freedom of Information and Protection of Privacy Act.

    *Quebec acts: Respecting the Protection of Personal Information in the Private Sector, Respecting Access to documents Held by Public Bodies and the Protection of Personal Information, la loi sur services de santé et services sociaux due Québec.

  • Figure 2.
    Figure 2.

    The CPCSSN data elements

    CPCSSN—Canadian Primary Care Sentinel Surveillance Network, DIN—drug identification number, EMR—electronic medical record, FSA—forward sortation area, ID—identification, MD—medical degree.

Tables

  • Table 1.

    Institutional research ethics board approval timelines

    NETWORK LOCATION (IREB TYPE)DATE IREB SUBMITTEDDATE AND TYPE OF IREB APPROVALTYPE OF SUBMISSIONFURTHER REQUESTS FROM THE IREBCOMMENTS
    Edmonton, Alta (university)May 22, 2008Jul 11, 2008, approval in principleExpeditedMore detailed protocolIREB approval in principle; able to access funds but no human subjects
    Jul 22, 2008, more details providedOct 3, 2008, approval with limitationsExpedited; no request for potential future data linkage included in submissionThat laboratory data not be collectedUnable to extract laboratory data from EMR without explicit patient consent
    Feb 16, 2009Jul 17, 2009IREB expedited request to collect laboratory dataAmendment as requestedFull approval
    Oct 9, 2008Dec 23, 2008Operational approval for first site recruitedFurther information regarding privacy and ethicsFull operational approval
    Dec 3, 2008Dec 9, 2008Operational approval for second site recruitedNoneFull operational approval
    Calgary, Alta (joint university and health region)May 28, 2008Jul 3, 2008NA: applicants may not select the type of submissionNoneFull approval
    Toronto, Ont (university)May 29, 2008Aug 7, 2008ExpeditedNoneFull approval
    Kingston, Ont (joint university and affiliated teaching hospital)May 7, 2008May 9, 2008Initial expedited approvalNoneFull expedited approval
    Feb 20, 2009Mar 9, 2009Amendment for extension of project and associated project deliverablesNoneFull board approval
    Apr 1, 2009Apr 25, 2009Annual re-approvalNoneFull expedited approval
    Aug 24, 2009Aug 24, 2009Updated patient information poster and adaptation of option 2 for regional data processing and data transferNoneFull expedited approval
    London, Ont (university)Jul 18, 2008Aug 29, 2008ExpeditedNoneFull approval
    Quebec (hospital ethics and scientific committee of the university)Oct 2008Not approved at this stage; revisions requestedFull boardVerbal discussions and e-mail exchanges with a representative of the CAIQ continued until Jan 2009 and outcome indicated that individual patient consent was required
    During this time additional clarifications were requested pertaining to items of data collected    		Full patient consent required
    Feb 2009Apr 30, 2009Full boardA letter from the Chair of the CPCSSN project was requested confirming that no linkages would be formed between data from the Q Net and other national databasesFull patient consent required
    Aug 2009Aug 30, 2009AmendmentFurther discussions with the CAIQ in Aug 2009 clarified the legal status of our clinic within the CSSS Laval. Site was told they could obtain permission from the DSP. A letter from the project chair was requested stating that there would be no linkages between data from the Q Net and other national databases during phase 2Waiver of full informed consent approved
    Newfoundland (university)May 26, 2008Jun 10, 2008Full boardNoneFull approval with limited clarifications
    Nova Scotia (health authority–based)*Jun 1, 2009Jul 27, 2009ExpeditedNoneCan collect only medication lists related to chronic diseases
    Manitoba (university)*Apr 13, 2009Jun 5, 2009ExpeditedNoneNo issues

    • CAIQ—Commission d’accès à l’information du Québec, CPCSSN—Canadian Primary Care Sentinel Surveillance Network, CSSS—Centres de santé et de services sociaux, DSP—Direction de santé publique, EMR—electronic medical record, IREB—institutional research ethics board, NA—not applicable.

    • ↵* Networks joined the CPCSSN project after March 2009.

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Ethics and privacy issues of a practice-based surveillance system
Jyoti A. Kotecha, Donna Manca, Anita Lambert-Lanning, Karim Keshavjee, Neil Drummond, Marshall Godwin, Michelle Greiver, Wayne Putnam, Marie-Thérèse Lussier, Richard Birtwhistle
Canadian Family Physician Oct 2011, 57 (10) 1165-1173;
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