E-consent systems are attracting considerable interest as healthcare providers
increasingly apply information technology and management to plan and deliver
high-quality and cost-effective healthcare. These systems can ensure that
patients are informed about the consequences of clinical intervention or the use
to which their personal health information is put, as well as able to log the
conditions of consent and create an audit trail. This article considers the
nature of patient consent and the control of information before outlining the
characteristics, benefits and limitations of e-consent systems. It then surveys
international developments in e-consent before describing a project to develop a
framework for such consent in New Zealand. The results of this project offer
recommendations for further development and implementation of the framework.
UK Department of Health
. Gaining Patient Consent to Disclosure.
Wetherby: Department of Health
, 2001.
3.
Beauchamp T L
,
Childress J F
. Principles of Biomedical Ethics5th edn.Oxford
, 2001.
4.
D’Arcy G G
.
Getting the HIPAA consent and notice mix right - for patient and provider
. Health Management Technology2002; 23 (7);
10
.
5.
Coeira E
,
Clarke R.E-consent: the design and implementation of consumer consent mechanisms in
an electronic environment
. Journal of the American Medical Informatics Association 7
December 2003; paper M1480; doi 10.1197.
6.
Hodge J G
,
Gostin L O
,
Jaconson P D.Legal issues concerning electronic health information
. Journal of the American Medical Association1999; 282 (15);
1466-1471
.
7.
Department of Health.Report on the Review of Patient Identifiable Information. Caldicott
Report.
London: Department of Health
, 1997.
8.
Wootton R
,
Craig J
eds. Introduction to Telemedicine.
London: Royal Society of Medicine
, 1999.
9.
Maheu M
,
Whitten P
,
Allen A.E-Health, Telehealth, and Telemedicine: A Guide to Startup and Success.
Indianapolis: Jossey-Bass
, 2001.
10.
Norris A C.Essentials of Telemedicine and Telecare.
Chichester: Wiley
, 2002.
11.
Johns M K.Informed consent for clinical photography
. Journal of Audiovisual Media in Medicine2002; 25 (2);
59-63
.
12.
Pallen M
,
Loman N. Videos
,
photographs, and patient consent: medical educationalists can free
themselves from constraints of ‘real world’ images
. British Medical Journal1998; 317;
1522
.
13.
Goodman K W.Ethics, Computing, and Medicine: Informatics and the Transformation of Health
Care.
Cambridge
, 1997.
14.
Clarke R.E-consent: a critical element of trust in e-business
. Proceedings of the 15th Bled Electronic Commerce
Conference, 17-19 June 2002, Bled.
15.
Clarke R.Consumer consent in electronic health data exchange. Xamax Consultancy
background paper V0.98, July 2002.
http://www.anu.edu.au/people/Roger.Clarke/EC/eConsent.html, 12 March 2002.
16.
Shah A N
,
Sugarman J.Protecting research subjects under the waiver of informed consent for
emergency research: experiences with efforts to inform the community
. Annals of Emergency Medicine2003; 41 (1);
72-78
.
17.
Corrigan O
,
Williams-Jones B.Consent is not enough: putting incompetent patients first in clinical trials
. The Lancet2003; 361;
2096-2097
.
18.
Muscari M E.When can an adolescent give consent?American Journal of Nursing1998; 98 (5);
18-19
.
19.
Hughes J C
,
Louw S J.Confidentiality and cognitive impairment: professional and philosophical ethics
. Age and Ageing2002; 31 (2);
147-150
.
20.
McLeod C.Authenticity and the hijacked brain
. American Journal of Bioethics2002; 2 (2);
62-63
.
21.
Arnold R M
,
Kellum J.Moral justifications for surrogate decision making in the intensive care
unit: implications and limitations
. Critical Care Medicine2002; 31 (5);
S347-S353
.
22.
US Department of Health and Human Services
. Summary of HIPAA Final Privacy Rule.
Office of Civil Rights, Washington
, 2003.
23.
United States General Accounting Office
. Medical privacy regulation: questions remain about implementing the new
consent requirement.
Washington: US General Accounting Office
, 2001.
24.
Finkelstein J B.HIPAA rule rapped as breaching privacy
. American Medical News2003; 46 (17);
9
.
25.
Dovey S
,
Tilyard M.Data protection and patients’ consent: New Zealand model of
consent offers solution
. British Medical Journal2001; 322;
549
.
26.
Department of Health and Aged Care
. Electronic Consent Research: Summary of Final Reports.
Canberra
, November 2002.
27.
Office of Government Information Technology
. Gatekeeper: A Strategy for Public Key Technology Use in the
Government.
Canberra
, 1998.
28.
Department of Health and Aged Care
. HealthConnect Project overview.
Canberra
, 2002.
29.
Stanberry B A.The Legal and Ethical Aspects of Telemedicine Chapter 3.
London: Royal Society of Medicine
, 1998.
30.
Lee-Winser J.The Data Protection Act: a decade of data protection in the NHS
. British Journal of Healthcare Computing and Information Management1995; 12 (5);
20-21
.
31.
The WAVE Advisory Board
. From Strategy to Reality: The WAVE Project.
Wellington: New Zealand Ministry of Health
, 2002.
32.
New Zealand Privacy Act 1993. Wellington: New Zealand Parliamentary Counsel
Office, 1993.
33.
Health Information Privacy Code 1994.
Wellington: Office of the Privacy Commissioner
, 1994. Amended in 1996: see http://www.privacy.org.nz/comply/HIPCWWW.pdf.
34.
Health and Disability Commissioner
. Code of Health and Disability Services Consumers’
Rights.
Wellington
, 1996.
35.
Galpottage P A B. Electronic consent principles and guidelines: a New Zealand
healthcare perspective. Chapter 3 (2), unpublished MCom Thesis, University of
Auckland, 2003.
36.
Galpottage P A B
,
Norris A C.Privacy and access issues in the development of a privacy/security
framework for exchange of health information in New Zealand
. Technology and Health Care2003; 11 (5);
314-315
.
37.
New Zealand Ministry of Health
. The Primary Health Care Strategy.
Wellington: Ministry of Health
, 2001.
