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Attitudes to sharing personal health information in living kidney donation.

https://arctichealth.org/en/permalink/ahliterature144792
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Publication Type
Article
Date
Apr-2010
Author
Patricia Hizo-Abes
Ann Young
Peter P Reese
Phil McFarlane
Linda Wright
Meaghan Cuerden
Amit X Garg
Author Affiliation
London Kidney Clinical Research Unit, Room ELL-101, Westminster, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario N6A 4G5, Canada.
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Adult
Aged
Attitude of Health Personnel
Confidentiality - legislation & jurisprudence - psychology
Cross-Sectional Studies
Female
Health Knowledge, Attitudes, Practice
Health Policy
Health Records, Personal
Humans
Informed Consent - legislation & jurisprudence - psychology
Kidney Transplantation - legislation & jurisprudence - psychology
Living Donors - legislation & jurisprudence - psychology
Male
Middle Aged
Ontario
Patient Education as Topic
Practice Guidelines as Topic
Questionnaires
Abstract
In living kidney donation, transplant professionals consider the rights of a living kidney donor and recipient to keep their personal health information confidential and the need to disclose this information to the other for informed consent. In incompatible kidney exchange, personal health information from multiple living donors and recipients may affect decision making and outcomes.
We conducted a survey to understand and compare the preferences of potential donors (n = 43), potential recipients (n = 73), and health professionals (n = 41) toward sharing personal health information (in total 157 individuals).
When considering traditional live-donor transplantation, donors and recipients generally agreed that a recipient's health information should be shared with the donor (86 and 80%, respectively) and that a donor's information should be shared with the recipient (97 and 89%, respectively). When considering incompatible kidney exchange, donors and recipients generally agreed that a recipient's information should be shared with all donors and recipients involved in the transplant (85 and 85%, respectively) and that a donor's information should also be shared with all involved (95 and 90%, respectively). These results were contrary to attitudes expressed by transplant professionals, who frequently disagreed about whether such information should be shared.
Future policies and practice could facilitate greater sharing of personal health information in living kidney donation. This requires a consideration of which information is relevant, how to put it in context, and a plan to obtain consent from all concerned.
Notes
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Cites: Am J Transplant. 2009 Jul;9(7):1558-7319459792
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Cites: J Pers Assess. 2006 Dec;87(3):305-1617134338
Cites: Clin J Am Soc Nephrol. 2006 Nov;1(6):1148-5317699340
Cites: Am J Transplant. 2008 Sep;8(9):1878-9018671676
Cites: Nephrol Dial Transplant. 2008 Oct;23(10):3316-2418599559
Cites: N Engl J Med. 2009 Mar 12;360(11):1096-10119279341
Cites: J Med Ethics. 2009 Apr;35(4):270-119332587
Cites: Kidney Int. 2009 May;75(10):1088-9819225540
Cites: Am J Transplant. 2004 Oct;4(10):1553-415367208
PubMed ID
20299371 View in PubMed
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A framework for an institutional high level security policy for the processing of medical data and their transmission through the Internet.

https://arctichealth.org/en/permalink/ahliterature192425
Source
J Med Internet Res. 2001 Apr-Jun;3(2):E14
Publication Type
Article
Author
C. Ilioudis
G. Pangalos
Author Affiliation
Informatics Laboratory, Faculty of Technology, Aristotle University of Thessaloniki, Thessaloniki, 54006, Greece; iliou@eng.auth.gr
Source
J Med Internet Res. 2001 Apr-Jun;3(2):E14
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Canada
Computer Security - legislation & jurisprudence - standards
Confidentiality - standards
Databases as Topic - classification - legislation & jurisprudence
Education, Professional - legislation & jurisprudence
Europe
Guidelines as Topic
Humans
Informed Consent - legislation & jurisprudence
Internet - standards
Medical Informatics Computing - legislation & jurisprudence - standards
Medical Records Systems, Computerized - standards
Organizational Policy
Patient Rights - legislation & jurisprudence
Quality of Health Care - legislation & jurisprudence
United States
Abstract
The Internet provides many advantages when used for interaction and data sharing among health care providers, patients, and researchers. However, the advantages provided by the Internet come with a significantly greater element of risk to the confidentiality, integrity, and availability of information. It is therefore essential that Health Care Establishments processing and exchanging medical data use an appropriate security policy.
To develop a High Level Security Policy for the processing of medical data and their transmission through the Internet, which is a set of high-level statements intended to guide Health Care Establishment personnel who process and manage sensitive health care information.
We developed the policy based on a detailed study of the existing framework in the EU countries, USA, and Canada, and on consultations with users in the context of the Intranet Health Clinic project. More specifically, this paper has taken into account the major directives, technical reports, law, and recommendations that are related to the protection of individuals with regard to the processing of personal data, and the protection of privacy and medical data on the Internet.
We present a High Level Security Policy for Health Care Establishments, which includes a set of 7 principles and 45 guidelines detailed in this paper. The proposed principles and guidelines have been made as generic and open to specific implementations as possible, to provide for maximum flexibility and adaptability to local environments. The High Level Security Policy establishes the basic security requirements that must be addressed to use the Internet to safely transmit patient and other sensitive health care information.
The High Level Security Policy is primarily intended for large Health Care Establishments in Europe, USA, and Canada. It is clear however that the general framework presented here can only serve as reference material for developing an appropriate High Level Security Policy in a specific implementation environment. When implemented in specific environments, these principles and guidelines must also be complemented by measures, which are more specific. Even when a High Level Security Policy already exists in an institution, it is advisable that the management of the Health Care Establishment periodically revisits it to see whether it should be modified or augmented.
Notes
Cites: Med Inform Internet Med. 2000 Oct-Dec;25(4):265-7311198188
PubMed ID
11720956 View in PubMed
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