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Health Information Privacy_ Confidentiality_ and Security

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					                                 Bibliography

     Health Information Privacy, Confidentiality, and Security
                                &
                   Electronic Health Records


I.     Literature

Health Information & Privacy
Buckovich, Suzy A., Helga E. Rippen & Michael J. Rozen, “Driving Toward Guiding
Principles: A Goal for Privacy, Confidentiality, and Security of Health Information”
(1999) 6:2 Journal of the American Medical Informatics Association 122.

Gibson, Elaine. “Is There a Privacy Interest in Anonymized Personal Health
Information?” (2003) Health Law Journal 97-129.

Gostin, Lawrence O. “Health Information Privacy” (1995) 80 Cornell Law Review 451.

Hodge, James. “National Health Information Privacy and New Federalism” (2000) 14:2
Notre Dame Journal of Law, Ethics & Public Policy 791.

Hussong, S. “Medical Records and Your Privacy: Developing Federal Legislation to
Protect Patient Privacy Rights” (2000) 26 American Journal of Law & Medicine 453.

Starr, P. “Health and the Right to Privacy” (1999) American Journal of Law & Medicine
193.

von Tigerstrom, Barbara, “Protection of Health Information Privacy: The Challenges and
Possibilities of Technology” (1998) 4 Appeal 44.

Weitz, Mark et al. “In Whose Interest? Current Issues in Communicating Personal Health
Information: A Canadian Perspective” (2003) 31 Journal of Law, Medicine & Ethics 292.


Electronic Health Records

Buckovich, Suzy A., Helga E. Rippen & Michael J. Rozen, “Driving Toward Guiding
Principles: A Goal for Privacy, Confidentiality, and Security of Health Information”
(1999) 6:2 Journal of the American Medical Informatics Association 122.

Gibson, Elaine. “Jewel in the Crown? The Romanow Commission Proposal to Develop a
National Electronic Health Record System” (2003) 66 Saskatchewan Law Review 647.
Hodge, James G., Lawrence O. Gostin & Peter D. Jacobsen. “Legal Issues Concerning
Electronic Health Information: Privacy, Quality and Liability” (1999) 282 Journal of the
American Medical Association 1466.

Miller, Robert H. “Physicians‟ Use of Electronic Medical Records: Barriers and
Solutions” (2004) 23:2 Health Affairs 116-127.

Podichetty, Vinod & David Penn, “The Progressive Roles of Electronic Medicine:
Benefits, Concerns, and Costs” (2004) 328:2 American Journal of Medical Science 94.

Simpson, R.L. “Ethics and Privacy in a Technologically Driven Health Care Network”
(1996) 21 Nursing Administration Quarterly 81-84.



Electronic Health Records – Experiences of Other Jurisdictions

Australia

Iacovino, Livia. “Networking Electronic Health Records: Issues Arising from the
HealthConnect Initiative” (2004) 12 Journal of Law & Medicine 5

Iacovino, Livia. “Trustworthy shared electronic health records: Recordkeeping
requirements and HealthConnect” (2004) 12 Journal of Law & Medicine 40

McSherry, Bernadette. “Ethical Issues in HealthConnect‟s shared electronic record
system” (2004) 12 Journal of Law & Medicine 60.

Mendelson, Danuta. “HealthConnect and the duty of care: A dilemma for medical
practitioners” (2004)12 Journal of Law & Medicine 69

Paterson, Moira. “HealthConnect and privacy: a policy conundrum” (2004) 12 Journal of
Law & Medicine 80.


United Kingdom

Adams, Trina, Martin Budden, Chris Hoare & Hugh Sanderson, “Lessons from the
central Hampshire electronic health record pilot project: issues of data protection and
consent” (2004) 328 British Medical Journal 871.

Hippisley-Cox, J. et.al. “The electronic patient record in primary care – regression or
progression? A cross-sectional study” (2003) 326 British Medical Journal 1439.
Humber, M. “National programme for information technology” (2004) 328 British
Medical Journal 1145.

Jadad, A. & T. Delamothe “What‟s next for electronic communication and health care?”
(2004) 328 British Medical Journal 1143.

Watts, G. “Can the new „electronic highway‟ for the NHS have a smooth launch?” (2004)
328 British Medical Journal 1156.

Willis, T. A. “NHS national programme for information technology: Programme erodes
confidentiality of medical records” (2004) 328 British Medical Journal 1200.


United States

Buttell, Phillip. “The Privacy and Security of Health Information in the Electronic
Environment Created by HIPAA” (2001) 10:3 Kansas Journal of Law & Public Policy
399.

Miller, R.; Sim, I. "Physicians‟ Use of Electronic Medical Records: Barriers and
Solutions" (2004) 23 Health Affairs 116.


Patient & Provider Perspectives and Experiences with Electronic Health
Records
Hassol, Andrea et al., “Patient Experiences and Attitudes about Access to a Patient
Electronic Health Care Record and Linked Web Messaging” (2004) 11:6 Journal of the
American Medical Informatics Association 505.

Consumers‟ Health Forum of Australia, “Electronic Health Records Consumer
Representatives Workshop Summary: Consumer participation in the development,
trialling and implementation of HealthConnect” (December 2004) www.chf.org.au

O‟Connell, R. et al., "Take Note(s): Differential EHR Satisfaction with Two
Implementations under One Roof" (2004) 11 Journal of the American Medical
Informatics Association 43.


Electronic Health Records – Research Uses

Kass, Nancy et al., “The Use of Medical Records: What Do Patients Want?” (2003) 31
Journal of Law, Medicine & Ethics 429.
Robling, M. et. al. “Public attitudes towards the use of primary care patient record data in
medical research without consent: a qualitative study” (2004) 30 Journal of Medical
Ethics 104.

Willison, Donald J. et al. “Patient consent preferences for research uses of information in
electronic medical records: interview and survey data” (2003) 326 British Medical
Journal 373.


II.    Discussion Papers / Reports

Canada
British Columbia Medical Association, Getting IT Right: Patient-Centred Information
Technology (January 2004), online:
http://www.bcma.org/public/news_publications/publications/policy_papers/ITPaper/Getti
ngITRight.htm

British Columbia Health Chief Information Officer Council, Framework for an
Electronic Health Record for British Columbians, online:
http://healthnet.hnet.bc.ca/pub_reports/ehr_framework.pdf.

Industry Canada, PIPEDA Awareness Raising Tools (PARTs) Initiative for the Health
Sector, online: http://ecom.ic.gc.ca/epic/internet/inecic-ceac.nsf/en/gv00235e.html

Office of the Privacy Commissioner of Alberta, Consent Issues with respect to the
Electronic Patient Record” by Frank Work, Q.C. (October 2002).

Federal-Provincial-Territorial Advisory Committee on Health Infostructure, Tactical
Plan for a Pan-Canadian Health Infostructure (Ottawa: Office of Health and the
Information Highway, 2001).

University of Toronto Joint Centre for Bioethics. Ethical and Legal Issues in Electronic
Health Information Systems (April 1998) online:
www.utoronto.ca/jcb/Resources/health_information.htm.


Other Jurisdictions

Australia

Cornwall, Amanda. “Connecting Health: A review of electronic health record projects in
Australia, Europe and Canada,” (2003) online: Public Interest Advocacy Centre
http://www.piac.asn.au/publications/pubs/churchill_20030121.html
HealthConnect Program Office. Consent and Electronic Health Records: A discussion
paper (July 2002) online: http://www.healthconnect.gov.au/pdf/cons_dp.pdf.

HealthConnect “Consent in the HealthConnect Trials: Outcomes of the HealthConnect
Workshop” (May, 2002) www.healthconnect.gov.au/publications/index.htm

HealthConnect, “Interim Research Report 5: What will be necessary to manage
privacy?”(April 2003) Available at: www.healthconnect.gov.au/publications/index.htm

National Electronic Health Records Taskforce. Issues Paper: A National Approach to
Electronic Health Records for Australia (March 2000) online:
http://www.gpcg.org/publications/docs/Ehrissue.doc.

National Health and Medical Research Council, “The Regulation of Health Information
Privacy in Australia: A description and comment” by Colin Thomson (January 2004)
www.nhmrc.gov.au/publications/synopses/nh53syn.htm


United Kingdom

Cambridge Health Informatics, ERDIP Evaluation Project N5: Patient Consent &
Confidentiality Study Report (16 May 2002)

National Health Service Information Authority, ERDIP EHR Issues and Lessons Learned
Report (24 October 2002)

National Health Service, Department of Health, Information Policy Unit, Legal and
Policy Constraints on Electronic Records – Requirements Report: An overview of legal
and policy requirements and constrains on use of electronic records (March 2002)

National Health Service Information Authority, ERDIP Lessons Learned – Architecture
Topic, Final Version (11 April 2003)


United States

Connecting For Health Markle Foundation, Connecting Americans to their Healthcare:
Final Report (July 2004), online: www.connectingforhealth.org.

Georgetown University, Health Privacy Project, State Health Privacy Laws (2nd edition,
2002) www.healthprivacy.org

National Research Council Institute of Medicine, For the Record: Protecting Electronic
Health Information (Washington, D.C.: National Academy Press, 1997) online:
<http://www.nap.edu/books/0309056977/html/index.html>.
III. Legislation

Canada

Federal

Personal Information Protection and Electronic Documents Act, S.C. 2000, c. 5

Privacy Act,

Provincial / Territorial

British Columbia

Freedom of Information and Protection of Privacy Act, R.S.B.C. 1996, c. 165

Personal Information Protection Act, S.B.C. 2003, c. 63

Alberta

Freedom of Information and Protection of Privacy Act, R.S.A. 2000, C. F-25

Health Information Act, R.S.A. 2000, c. H-5

Personal Information Protection Act, S.A. 2003, c. P-6.5

Saskatchewan

Freedom of Information and Protection of Privacy Act, S.S. 1990-91, c. F-22.01

Health Information Protection Act, S.S. 1999, c. H-0.021

Manitoba

Freedom of Information and Protection of Privacy Act,

Personal Health Information Act, C.C.S.M. c. P33.5


Ontario

Freedom of Information and Protection of Privacy Act

Personal Health Information Protection Act
Québec

Act respecting access to documents held by public bodies and the protection of personal
information, R.S.Q. A-2.1

Nova Scotia

Freedom of Information and Protection of Privacy Act, S.N.S. 1993, c. 5

New Brunswick

Protection of Personal Information Act, S.N.B. 1998, c. P-19.1


Prince Edward Island

Freedom of Information and Protection of Privacy Act R.S.P.E.I. 2002, c. F-15.01


Newfoundland & Labrador

Access to Information and Protection of Privacy Act, S.N.L. 2002, c.A-1.1 (Part IV yet to
be proclaimed)

Freedom of Information Act, R.S.N.L. 1990, c. F-25.


Yukon

Access to Information and Protection of Privacy Act, R.S.Y. 2002, c.1


Northwest Territories

Access to Information and Protection of Privacy Act, S.N.W.T. 1994, c. 20

Nunavut

Access to Information and Protection of Privacy Act (Nunavut), R.S.N.W.T. 1994, c. 20
IV. Codes of Conduct

Canada

BC Health Information Standards Council, Healthcare Privacy Code of Practice, online:
http://healthnet.hnet.bc.ca/hds/proposed_standards/cop.html

Canadian Medical Association, Health Information Privacy Code (August 1998) online:
http://www.cma.ca/index.cfm/ci_id/3216/la_id/1.htm.

Canadian Medical Association, Code of Ethics, online:
http://www.cma.ca/index.cfm/ci_id/2419/la_id/1.htm.


Other Jurisdictions
Australia

National Health Privacy Working Group of the Australian Health Ministers‟ Advisory
Council, “Proposed National Health Privacy Code” (August 2003)
www.health.gov.au/pubs/nhpcode.htm

Office of the Federal Privacy Commissioner of Australia, National Privacy Principles
(extracted from the Privacy Amendment (Private Sector) Act, 2000) online:
http://www.privacy.gov.au/publications/npps01.html.


United Kingdom

National Health Service, Confidentiality and Disclosure of Information: General Medical
Services, Personal Medical Services, and Alternative Provider Medical Services Code of
Practice (24 March 2005)

National Health Service, Confidentiality Code of Practice (November 2003).

				
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