Hostname: page-component-cc8bf7c57-77pjf Total loading time: 0 Render date: 2024-12-10T13:09:57.976Z Has data issue: false hasContentIssue false

In Whose Interest? Current Issues in Communicating Personal Health Information: A Canadian Perspective

Published online by Cambridge University Press:  01 January 2021

Extract

The continuing spread and development of electronic data interchange in health care settings is fuelling a significant global debate about the practicality, ethics, and legality of such a practice. The uncertainties implicit in this debate are particularly acute in the context of disease or population groups for whom multidisciplinary, multipleagency teamworking has become acknowledged as the “best practice” for providing effective and timely care or support. The greying of the population is a demographic phenomenon that will have a profound impact on the health care system, social care agencies, and caregivers, and will require a greater degree of service coordination in order to meet the complex care needs of both care-receiver and caregiver.

Type
Article
Copyright
Copyright © American Society of Law, Medicine and Ethics 2003

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Fisher, M, “Man-Made Care: Community Care and Older Male Carers,” The British Journal of Social Work, 14 (1994): 659–80; Neysmith, S., “From Home Care to Social Care: The Value of a Vision,” in Baines, C., Evans, P., Neysmith, S., eds., Women's Caring: Feminist Perspectives on Social Welfare (Oxford: Oxford University Press, 1998): 233–48.Google Scholar
Drummond, N. et al., “Integrated Care for Asthma: A Clinical, Social and Economic Evaluation,” British Medical Journal, 308, no. 6928 (1994): 559–64; Currie, N. and Drummond, N., “Integrated Health and Social Care for Dementia,” Scottish Medical Journal, 41 (1996): 61; Diabetes Integrated Care Evaluation Team, “Integrated Care for Diabetes: Clinical, Psychosocial and Economic Evaluation,” British Medical Journal, 308, no. 6938 (1994): 1208–12; Alzheimer Society for Metropolitan Toronto, The Continuum of Services for People with Alzheimer Disease and Family Caregivers: A Vision (Toronto: Alzheimer Society for Metropolitan Toronto, 1994); Patterson, C. et al., “Canadian Consensus Conference on Dementia: A Physician's Guide to Using the Recommendations,” Canadian Medical Association Journal, 160, no. 12 (1999): 1738–42; Small, G.W. et al., “Diagnosis and Treatment of Alzheimer Disease and Related Disorders. Consensus Statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society,” JAMA, 278, no. 16 (1997): 1363–71.CrossRefGoogle Scholar
Barrows, R.C.J., Clayton, P.D., “Privacy, Confidentiality, and Electronic Medical Records,” Journal of the American Medical Informatics Association, 3, no. 2 (1996): 139–48; Jadad, A.R., “Promoting Partnerships: Challenges for the Internet Age,” British Medical Journal, 319, no. 7212 (1999): 761–64; Industry Canada, Privacy and the Information Highway: Regulatory Options for Canada (December 11, 1996),at <http://strategis.ic.gc.ca/SSG/ca00257e.html#10>; Rock, B., Congress, E., “The New Confidentiality for the 21st Century in a Managed Care Environment,” Social Work, 44, no. 3 (1999): 253–61; Singer, P., “Recent Advances: Medical Ethics,” British Medical Journal, 321, no. 7256 (2000): 282–85.CrossRefGoogle Scholar
Tang, P.C. and Hammond, W.E., “Progress Report on Computer-Based Patient Records in the United States,” in Dick, R.S. Steen, E.B. Detmer, D.E., eds., Institute of Medicine, The Computer-Based Patient Record, rev. ed. (Washington, D.C.: National Academy Press, 1997) (quoting from the Computer-Based Patient Records Institute), available at <http://www.nap.edu/html/computer/commentary.html#top>.Google Scholar
Protti, D.J., The Electronic Health Record—A Journey or a Destination?, presentation given at Baycrest Centre for Geriatric Care, Toronto, July 2000.CrossRefGoogle Scholar
Dick, R.W. and Steen, E.B., eds., The Computer-Based Patient Record: An Essential Technology for Health Care (Washington, D.C.: National Academy Press, 1991).Google Scholar
Centre for Health Informatics & Multiprofessional Education, The Good European Health Record, at <http://www.chime.ucl.ac.uk/HealthI/GEHR/> (last visited May 14, 2003); The Good Electronic Health Record, Frequently Asked Questions: Why GEHRf, at <http://www.gehr.org/introduaion/faq-l.html> (last visited May 14, 2003).+(last+visited+May+14,+2003);+The+Good+Electronic+Health+Record,+Frequently+Asked+Questions:+Why+GEHRf,+at++(last+visited+May+14,+2003).>Google Scholar
Balaban, D., “Strategies for Clinics: How Integrated Delivery Systems Are Applying Automation at Their Group Practices,” Health Data Management, 6, no. 9 (1998): 5258; Cameron, S. et al., “Harnessing Technology: The Creation of an Electronic Care Management Record in a Social Health Maintenance Organisation,” Managed Care Quarterly, 7, no. 1 (1999): 11–15; Dwyer, C., “Ideas and Trends: Medical Informatics and Health Care Computing,” Annals of Internal Medicine, 130, no. 2 (1999): 170–172; Medical Records Institute, Fourth Annual MRI Survey of Electronic Health Record Trends and Usage (2002), available at <http://www.medrecinst.com/resources/survey/survey02/overview.shtml>; Protti, D.J., “The Synergism of Health/Medical Informatics Revisited,” Methods of Information in Medicine, 34, no. 5 (1995): 441–45.Google Scholar
Medical Records Institute, supra note 8.Google Scholar
Advisory Council on Health Infostructure, Health Canada, Canada Health Infoway: Paths to Better Health, Final Report (February 1999), available at <http://www.hc-sc.gc.ca/ohih-bsi/pubs/1999_pathsvoies/fin-rpt_e.pdf>..>Google Scholar
Saskatchewan Health Information Network, About SHIN: What Is SHIN?, at <http://www.shin.sk.ca/about/whatis_shin.html> (last visited June 24, 2003).+(last+visited+June+24,+2003).>Google Scholar
Shaw, A., “Provincial Health Networks Slowed Down by the Lack of New Privacy Legislation,” Canadian Health Care Technology (March 2000).Google Scholar
Ontario Health Services Restructuring Commission, Looking Back, Looking Forward: A Legacy Report (March 2000): At 147, available at <http://www.hsrc.gov.on.ca/HSRC.pdf>..>Google Scholar
Telehealth Ethics Programme, Centre for Bioethics, The Networking of Health Information in Quebec: Development of a Guide to Evaluate, Present, and Manage Ethical, Legal, and Social Issues (ELSI) on the Information Highway, at <http://www.ircm.qc.ca/bioethique/english/telehealth/project_risque.html> (last visited July 8, 2000).+(last+visited+July+8,+2000).>Google Scholar
Buckovich, S.A., Rippen, H.E., Rozen, M.J. “Driving Toward Guiding Principles: A Goal for Privacy, Confidentiality, and Security of Health Information,” Journal of the American Medical Informatics Association, 6, no. 2 (1999): 122–33; Foran, B., “Privacy on the Information Highway: Myth or Reality?,” Government Information in Canada, 2, no. 2.4 (1995), available at <http://www.usask.ca/library/gic/v2n2/foran/foran.html#1>; Gostin, L.O., “Health Care Information and the Protection of Personal Privacy: Ethical and Legal Considerations,” Annals of Internal Medicine, 127, no. 8, pt. 2 (1997): 683–90; Hoey, J., “The CMA's Health Information Privacy Code: Does It Go Too Far?,” Canadian Medical Association Journal, 150, no. 8 (1998): 953–54; Mullen, M.A. and Lavery, J., Ethical and Legal Issues in Electronic Health Information Systems: Report of the University of Toronto Joint Centre for Bioethics Working Group (April 20, 1998), available at <http://www.utoronto.ca/jcb/Clinical/health_infbrmation.htm>.CrossRefGoogle Scholar
Simpson, R.L., “Ethics and Privacy in a Technologically Driven Health Care Network,” Nursing Administration Quarterly, 21, no. 1 (1996): 8184, at 81.CrossRefGoogle Scholar
See Hoey, , supra note 16, at 953.Google Scholar
Dykeman, M.J. and Ferris, L.E., Critical Developments in Confidentiality and Access to Personal Health Information, paper presented at Hospital Liability: New Risks and New Strategies for Loss Prevention, Toronto, 2000.Google Scholar
See Gostin, , supra note 16. See also Mullen, and Lavery, , supra note 16; Vandenbroucke, J.P., “Maintaining Privacy and the Health of the Public: Should Not Be Seen as in Opposition,” British Medical Journal, 316, no. 7141 (1998): 1331–32.Google Scholar
Kelman, K.C., “Privacy and Research with Human Beings,” Journal of Social Issues, 33 (1997): 169–95.CrossRefGoogle Scholar
Willison, D.J., “Health Services Research and Personal Health Information: Privacy Concerns, New Legislation and Beyond,” Canadian Medical Association Journal, 159 (1998): 1378–80, available at <http://colleaion.nlc-bnc.ca/100/201/300/cdn_medical_association/cmaj/vol-159/issue-11/1378.htm>.Google Scholar
Canadian Medical Association Health Information Privacy Code (August 15, 1998): At Section B: Definitions, available at <http://www.cma.ca/cma/common/displayPage.do?pageId=/staticContent/HTML/N0/12/inside/policybase/1998/09-16.htm>..>Google Scholar
Bok, S., “The Limits of Confidentiality,” in Callahan, J.C., ed., Ethical Issues in Professional Life (New York: Oxford University Press, 1988): 230–39.Google Scholar
McInerney v. MacDonald, [1992] 2 S.C.R. 138.Google Scholar
Willison, , supra note 23.Google Scholar
See Hoey, , supra note 16.Google Scholar
Bennett, C.J., Regulating Privacy in Canada: An Analysis of Oversight and Enforcement in the Private Sector (May 1996) <http://www.privacyinternational.org/countries/canada/bennett_regulating_privacy.html>; Advisory Council on Health Infostructure, Paths to Better Health: Final Report (Ottawa: Health Canada Publications, 1999), available at <http://www.hc-sc.gc.ca/ohih-bsi/pubs/1999_pathsvoies/fin-rpt_e.pdf>.Google Scholar
See Industry Canada, supra note 3. See also Foran, , supra note 16.Google Scholar
Organization for Economic Co-operation and Development (OECD), Guidelines on the Protection of Privacy and Transborder Flows of Personal Data (Paris: OECD, 1981).Google Scholar
Council Directive 95/46/EC of October 24, 1995 on the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of Such Data, available at <http://www.dataprivacy.ie/6aii.htm>..>Google Scholar
Industry Canada, Electronic Commerce in Canada: The International Evolution of Data Protection, at <http://e-com.ic.gc.ca/english/fastfacts/43d10.html> (last modified February 6, 2002).+(last+modified+February+6,+2002).>Google Scholar
Craig, J., Bill C-6: Personal Information Protection and Electronic Documents Act (October 15, 1999, revised May 15, 2000), available at <http://www.parl.gc.ca/36/2/parlbus/chambus/house/bills/summaries/c6-e.htm#BACKGROUND(txt)s>..>Google Scholar
Martin, A., ed., Model Code for the Protection of Personal Information (Mississauga, Ontario: Canadian Standards Association, 1996).Google Scholar
Privacy Act, R.S.C. 1985, ch. P-21.Google Scholar
See Willison, , supra note 23; Privacy Commissioner of Canada, Privacy Legislation in Canada, at <http://www.privcom.gc.ca/fs-fi/fs2001–02_e.asp> (revised January 2002); Savard, A.M., “Bill C-54 (Now C-6): Personal Information Protection and Electronic Documents Act: Polemic About Bill's Application in the Health Sector,” Bulletin of the Telehealth Ethics Observatory, 1, no. 5 (October 22, 1999), available at <http://www.ircm.qc.ca/bioethique/english/telehealth/previous_issue15.html#C-54>; Savard, A.M., “Bill C-6: Personal Information Protection and Electronic Documents Act: The Debate Continues on Its Application to Health,” Bulletin of the Telehealth Ethics Observatory, 1, no. 6 (December 21, 1999), available at <http://www.ircm.qc.ca/bioethique/english/telehealth/previousjssue16.html>.Google Scholar
Personal Information Protection and Electronic Documents Act, R.S.C. 2000, ch. 5.Google Scholar
Health Information Act, R.S.A. 2000, ch. H-5.Google Scholar
Health Information Protection Act, S.S. 1999, ch. H-0.021.Google Scholar
Personal Health Information Act, R.S.M. 1997, ch. 51.Google Scholar
An Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information, R.S.Q. (1982), ch. A-2.1; Bill 122, An Act to Amend the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information, the Act Respecting the Protection of Personal Information in the Private Sector, the Professional Code, and Other Legislative Provisions (2000); An Act Respecting the Protection of Personal Information in the Private Sector, the Professional Code and Other Legislative Provisions, R.S.Q. (1994), ch. P-39.1; An Act to Amend the Act Respecting Health Services and Social Services as Regards Access to Users’ Records, R.S.Q. (2000), ch. 45; Bill 180, An Act to Amend Various Legislative Provisions as Regards the Disclosure of Confidential Information to Protect Individuals (2000).Google Scholar
Industry Canada, Electronic Commerce in Canada: The Protection of Personal Information in Quebec, at <http://e-com.ic.gc.ca/english/fastfacts/43d12.html> (last modified February 6, 2002).+(last+modified+February+6,+2002).>Google Scholar
See Health Information Act, R.S.A. 2000, ch. H-5.Google Scholar
See Health Information Protection Act, S.S. 1999, ch. H-0.021.Google Scholar
Id. § 7(1).Google Scholar
Tigerstrom, B.V., “The Health Information Act: Controversial New Legislation for Alberta,” Bulletin of the Telehealth Ethics Observatory, 2, no. 1 (February 9, 2000), available at <http://www.ircm.qc.ca/bioethique/english/telehealth/archives/issue21.html#loi40>.Google Scholar
See Health Information Act, R.S.A. 2000, ch. H-5, § 34(1).Google Scholar
See Tigerstrom, , supra note 49.Google Scholar
Canadian Medical Association, Press Release, Canadians Highly Value the Privacy and Confidentiality of Their Health Information (November 29, 1999), available at <http://www.cma.ca/cma/common/displayPage.doPpageld=/staticContent/HTML/NO/12/advocacy/news/1999/11-29.htm>..>Google Scholar
See Health, Policy and Planning Division, Saskatchewan Health, Consultation Paper on Protection of Personal Health Information (1997), available at <http://www.health.gov.sk.ca/ph_br_healthleg_phiq/toc.htm>..>Google Scholar
Klop, R., van Wijman, F.C.B., and Philipsen, H., “Patients’ Rights and the Admission and Discharge Process,” Journal of Advanced Nursing, 16, no. 4 (1991): 408–12.CrossRefGoogle Scholar
Carman, D. and Britten, N., “Confidentiality of Medical Records: The Patient's Perspective,” British Journal of General Practice, 45, no. 398 (1995): 485–88.Google Scholar
See Vandenbroucke, , supra note 21.Google Scholar
Donaldson, C., “Eliciting Patients’ Values by Use of ‘Willingness to Pay’: Letting the Theory Drive the Method,” Health Expectations, 4, no. 3 (2001): 180–88.CrossRefGoogle Scholar
Ryan, M., McIntosh, E., and Shackley, P., “Using Conjoint Analysis to Elicit the Views of Health Service Users: An Application to the Patient Health Card,” Health Expectations, 1, no. 2 (1998): 117–29.CrossRefGoogle Scholar
Law, S.A. and Britten, N., “Factors That Influence the Patient Centredness of a Consultation,” British Journal of General Practice, 45, no. 399 (1995): 520–24; Steven, K., Morrison, J., and Drummond, N., “Lay versus Professional Motivation for Asthma Treatment: A Cross-Sectional, Qualitative Study in a Single Glasgow General Practice,” Family Practice, 19, no. 2 (2002): 172–77.Google Scholar