Health Links

(The documents on these sites are presented in their original language.)

The following links offer information on issues related to health information and privacy. Some of them lead to privacy reference materials developed by privacy advocacy groups, patients' rights groups, medical associations and provincial privacy bodies. Others will take you to sites that contain information on current initiatives that threaten health information privacy. In general, we hope this page provides an informative introduction to the health information privacy debate.

• Recommended Reading
• Canada's Health Infostructure
• Provincial Initiatives & Laws
• Health Research
• Court Decisions
• International Links

Recommended Reading

Statements on Health by the Privacy Commissioner of Canada and Senior Officials

The Advent of Electronic Health Records (EHRs) in the Current Legal and Policy Context
Electronic Health Information & Privacy Conference
Ottawa Centre for Research and Innovation
Address by Patricia Kosseim, General Counsel
Ottawa, Ontario
November 30, 2005

Rising to the Challenge
8^th Annual Access and Privacy Conference
Address by Jennifer Stoddart, Privacy Commissioner of Canada
Edmonton, Alberta
June 17, 2005

Coordinating Investigations: How the Federal and Provincial Commissioners are Working Together
Personal Health Information Protection Act Conference 2005
Address by Patricia Kosseim, General Counsel
Toronto, Ontario
May 4, 2005

Health Information Privacy
4th Annual Health Information Privacy Conference
Address by Patricia Kosseim, General Counsel
Toronto, Ontario
January 17, 2005

Bill C-12, the Quarantine Act
House Standing Committee on Health
Statement by Raymond D'Aoust, Assistant Privacy Commissioner of Canada
Ottawa, Ontario
November 18, 2004

Privacy Laws & Health Information: Making it Work
Privacy Laws & Health Information Conference
Address by Jennifer Stoddart, Privacy Commissioner of Canada
Regina, Saskatchewan
October 27, 2004

Building Bridges — Implementing PIPEDA
Access & Privacy Conference 2004, hosted by the University of Alberta
Edmonton, Alberta
Address by Jennifer Stoddart, Privacy Commissioner of Canada
June 10, 2004

Statement to the Senate Standing Committee on Social Affairs, Science and Technology regarding Bill C-6, the Assisted Human Reproduction Act
Ottawa, Ontario
Address by Jennifer Stoddart, Privacy Commissioner of Canada
March 3, 2004

Other resources

• Policy by Procrastination: Secondary Use of Electronic Health Records for Health Research Purposes
  Article published in the McGill Journal of Law and Health by Patricia Kosseim, General Counsel and Megan Brady, Legal Counsel, 2008
• Information on PIPEDA for Health Care Sector Organizations
  http://www.ic.gc.ca/eic/site/ecic-ceac.nsf/eng/h_gv00207.html
• The Canadian Medical Association Health Information Privacy Code, August 1998:
  http://www.cma.ca/index.cfm/ci_id/3216/la_id/1.htm
• Electronic Privacy Information Centre - Health Information Privacy Links: http://www.epic.org/privacy/medical/

Canada's Health Infostructure

Health Canada: Office of Health and the Information Highway

• Reports & Publications - eHealth: http://www.hc-sc.gc.ca/hcs-sss/pubs/ehealth-esante/index_e.html

• Pan-Canadian Health Information Privacy and Confidentiality Framework: http://www.hc-sc.gc.ca/hcs-sss/pubs/ehealth-esante/2005-pancanad-priv/index_e.html

Health Canada: proposed Assisted Human Reproduction legislation

• Bill C-13, the proposed Assisted Human Reproduction Act http://www.parl.gc.ca/37/2/parlbus/chambus/house/bills/government/C-13/C-13_1/C-13_cover-E.html

Canadian Institute for Health Information (CIHI)

• About CIHI: http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page="profile_e"
• Health Information Roadmap Initiative: http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page="profile_roadmap_e"
• Privacy and Data Protection at CIHI: http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page="privacy_e"

Statistics Canada: Canadian Community Health Survey

• Canadian Community Health Survey: http://www.statcan.ca/english/concepts/health/index.htm
• Survey questionnaire: http://www.statcan.ca/english/concepts/health/content.htm

Provincial Initiatives and Laws

Alberta

• Alberta Health and Wellness web site: http://www.health.gov.ab.ca
• Alberta Information and Privacy Commissioner's Guide to the Health Information Act, Health Information - A Personal Matter:
  http://www.oipc.ab.ca/ims/client/upload/HIA_Guide.pdf
• Alberta OIPC's Privacy Impact Assessment resources:
  http://www.oipc.ab.ca/pia/
• Alberta's health information network: http://www.albertawellnet.org/
• Alberta's Health Information Act (HIA) came into effect on April 25, 2001. The HIA provides individuals with the right to request access to health records in the custody or under the control of custodians, while providing custodians with a framework within which they must conduct the collection, use and disclosure of health information.
• Alberta Commissioner's Health Information Act site: http://www.oipc.ab.ca/hia/
• Alberta Privacy Commissioner Frank Work's speech on health (October 2002): http://www.oipc.ab.ca/ims/client/upload/AssessingtheStateof
  HealthPrivacy-OttawaOct21.pdf

British Columbia

• British Columbia does not have health privacy-specific legislation, but its Freedom of Information and Protection of Privacy Act (proclaimed in October 1993) covers public bodies (such as hospitals and health authorities) and self-governing bodies of professions or occupations (such as the College of Physicians and Surgeons). As such, this legislation addresses public sector health information practices.
• Office of the Information and Privacy Commissioner of BC:
  http://www.oipcbc.org/
• B.C. Privacy Commissioner David Loukidelis' speech on health privacy and the BC experience (June 2001): http://www.oipcbc.org/publications/speeches_presentations/
  speech_04.html

Manitoba

• Manitoba's Personal Health Information Act (PHIA) was proclaimed on December 11, 1997. It was the first legislation of its kind in Canada designed specifically to provide access to information rights and protection of privacy rights concerning personal health information.
• The Personal Health Information Act: http://web2.gov.mb.ca/laws/statutes/ccsm/p033-5e.php
• Manitoba Health's Personal Health Information Act site: http://www.gov.mb.ca/health/phia/index.html
• Information on the Personal Health Information Act from the Office of the Ombudsman: http://www.ombudsman.mb.ca/phia.htm

Ontario

• New Ontario health privacy legislation: http://www.ipc.on.ca/scripts/index_.asp’action=31&N_ID=1&P_ID=23&U_ID=0
• Ontario's Consultation on Privacy Protection (August 2002): http://www.cbs.gov.on.ca/mcbs/english/56HK6V.htm

Quebec

• Quebec's Act respecting the protection of personal information in the private sector covers health information in the private sector. It applies to all enterprises in Quebec, including private sector organizations which deliver health services, as well as any professional who operates a practice.
• Quebec's Act respecting access to documents held by public bodies and the protection of personal information applies to the remainder of the health sector.
• La Commission d'accès à l'information:
  http://www.cai.gouv.qc.ca/eng/index_en.htm
• «Québec Health Smart Card Watch» from the TelehealthEthics Observatory, Telehealth Ethics Program of the Centre for Bioethics of the Clinical Research Institute of Montreal. http://www.ircm.qc.ca/bioethique/english/telehealth/suppl_card/
  suppl_card19.html

Saskatchewan

• Saskatchewan Health's Health Information Protection Act page:
  http://www.health.gov.sk.ca/health-information-protection-act
  • HIPA Compliance Checklist:
    http://www.health.gov.sk.ca/hipa-checklist
  • Overview of the Health Information Protection Act:
    http://www.health.gov.sk.ca/hipa-overview
• Saskatchewan OIPC's Privacy Impact Assessment resources:
  http://www.oipc.sk.ca/resources.htm

Health Research

• Canadian Institutes for Health Research (CIHI): http://www.cihr-irsc.gc.ca/
• Canadian Institutes of Health Research's privacy-related publications: http://www.cihr-irsc.gc.ca/e/6426.html
• Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, June 2003: http://www.pre.ethics.gc.ca/english/policystatement/policystatement.cfm

Some Court Decisions

Supreme Court of Canada

• McInerney v. MacDonald [1992] 2 S.C.R. 138: http://www.lexum.umontreal.ca/csc-scc/en/pub/1992/vol2/html/1992scr2_0138.html
• R. v. Mills [1999] 3 S.C.R. 668: http://www.lexum.umontreal.ca/csc-scc/en/pub/1999/vol3/html/1999scr3_0668.html
• R. v. O'Connor [1995] 4 S.R.C. 411: http://www.lexum.umontreal.ca/csc-scc/en/pub/1995/vol4/html/1995scr4_0411.html
• R. v. Dyment [1988] 2 S.R.C. 417: http://www.lexum.umontreal.ca/csc-scc/en/pub/1988/vol2/html/1988scr2_0417.html

U.S. Court Decisions

• Tarasoff v. Regents of the University of California. This case is discussed in the Canadian context in "Bioethics for clinicians: Confidentiality" by Irwin Kleinman, MD; Françoise Baylis, PhD; Sandra Rodgers, LLB/BCL, LLM; Peter Singer, MD, MPH in the CMAJ 1997;156:521-4 http://www.cmaj.ca/cgi/content/abstract/156/4/521
• Anonymous v. CVS Corp.: N.Y. Sup. Ct. - No. 604804/99, March 1, 2001. In this case, the New York State Supreme Court ruled that pharmacies have a fiduciary duty of confidentiality with respect to customers' prescription records.

International Links

Australia

• Australia's Federal Privacy Commissioner's web page on health-related privacy matters: http://www.privacy.gov.au/health/index.html

Europe

• 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. http://cm.coe.int/ta/rec/1997/97r5.html

New Zealand

• Office of the New Zealand Privacy Commissioner - health Links: http://www.privacy.org.nz/shealthf.html

United Kingdom

• An editorial in the British Medical Journal (322:442-443, February 24, 2001) by Ross Anderson entitled "Undermining data privacy in health information" http://bmj.com/cgi/content/full/322/7284/442 about the British government's Health and Social Care Bill: http://www.publications.parliament.uk/pa/cm200001/cmbills/042/01042--m.htm
• UK Foundation for Information Policy Research's medical privacy-related resources: http://www.cl.cam.ac.uk/users/rja14/#Med
• UK National Health Service Information Authority confidentiality management site.

United States

• Privacy Rights Clearinghouse, "How Private Is My Medical Information?", October 2000: http://www.privacyrights.org/fs/fs8-med.htm
• Citizens' Council on Health Care's Patient and Medical Confidentiality page: http://www.cchconline.org/privacy.php3
• The US Department of Health and Human Services resources on the Health Insurance Portability and Accountability Act of 1996: http://www.hhs.gov/ocr/hipaa/
• US Health Privacy Project: http://www.healthprivacy.org/
  

World Medical Association

• World Medical Association Declaration of Helsinki - Recommendations Guiding Medical Doctors in Biomedical Research Involving Human Subjects: http://www.wma.net/e/policy/b3.htm