What is the role of clinical ethics support in the era of e-medicine?
The internet is becoming increasingly important in health care practice. The number of health-related web sites is rising exponentially as people seek health-related information and services to supplement traditional sources, such as their local doctor, friends, or family. The development of e-medicine poses important ethical challenges, both for health professionals and for those who provide clinical ethics support for them. This paper describes some of these challenges and explores some of the ways in which those who provide clinical ethics support might respond creatively to them. By offering ways of responding to such challenges, both electronically and face-to-face, the providers of clinical ethics support can show themselves to be an indispensable part of good quality health care provision. (+info)
A framework for an institutional high level security policy for the processing of medical data and their transmission through the Internet.
BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. (+info)
Evidence-based patient choice and consumer health informatics in the Internet age.
In this paper we explore current access to and barriers to health information for consumers. We discuss how computers and other developments in information technology are ushering in the era of consumer health informatics, and the potential that lies ahead. It is clear that we witness a period in which the public will have unprecedented ability to access information and to participate actively in evidence-based health care. We propose that consumer health informatics be regarded as a whole new academic discipline, one that should be devoted to the exploration of the new possibilities that informatics is creating for consumers in relation to health and health care issues. (+info)
Let the consumer decide? The regulation of commercial genetic testing.
OBJECTIVES: The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. "Over-the-counter" or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves. DESIGN: The discussion is illustrated by findings from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests. SAMPLE-Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject. RESULTS: Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type. CONCLUSION: To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (+info)
Open Source Software meets gene expression.
Use of the Open Source Software (OSS) development model has been crucial in a number of recent technological areas, including operating systems, applications and bioinformatics. The rationale for why OSS is often a better development model than proprietary development and some of the results of this model in the field of Gene Expression are reviewed. The paper concludes with a discussion of why funding agencies should endorse OSS and require funded software projects to be released Open Source. (+info)
Consumer-driven, patient-centered health care in the age of electronic information.
Americans are turning in increasing numbers to the Internet for information related to their health. Access to information that was previously difficult, if not impossible, for consumers to obtain has helped drive a shift in traditional roles for patients and physicians. Technology has made possible additional avenues for communication that can enhance new relationships. Ample opportunities exist for librarians to participate in a collaborative practice role, helping to serve the needs of both consumers and physicians as consumer-driven, patient-centered health care evolves to meet its full potential. (+info)
Personal health records: evaluation of functionality and utility.
OBJECTIVES: Web-based applications have been developed that allow patients to enter their own information into secure personal health records. These applications are being promoted as a means of providing patients and providers with universal access to updated medical information. The authors evaluated the functionality and utility of a selection of personal health records. DESIGN: A targeted search strategy was used to identify eleven Web sites promoting different personal health records. Specific criteria related to the entry and display of data elements were developed to evaluate the functionality of each PHR. Information abstracted from an actual case was used to create a series of representative PHRs. Output generated for review was evaluated to assess the accuracy and completeness of clinical information related to the diagnosis and treatment of specific disorders. RESULTS: The PHRs selected for review employed data entry methods that limited the range and content of patient-entered information related to medical history, medications, laboratory tests, diagnostic studies, and immunizations. Representative PHRs created with information abstracted from an actual case displayed varying amounts of information at basic and comprehensive levels of representation. CONCLUSIONS: Currently available PHRs demonstrate limited functionality. The data entry, validation, and information display methods they employ may limit their utility as representations of medical information. (+info)
Giving patients access to their medical records via the internet: the PCASSO experience.
OBJECTIVE: The Patient-Centered Access to Secure Systems Online (PCASSO) project is designed to apply state-of-the-art-security to the communication of clinical information over the Internet. DESIGN: The authors report the legal and regulatory issues associated with deploying the system, and results of its use by providers and patients. Human subject protection concerns raised by the Institutional Review Board focused on three areas-unauthorized access to information by persons other than the patient; the effect of startling or poorly understood information; and the effect of patient access to records on the record-keeping behavior of providers. MEASUREMENTS: Objective and subjective measures of security and usability were obtained. RESULTS: During its initial deployment phase, the project enrolled 216 physicians and 41 patients; of these, 68 physicians and 26 patients used the system one or more times. The system performed as designed, with no unauthorized information access or intrusions detected. Providers rated the usability of the system low because of the complexity of the secure login and other security features and restrictions limiting their access to those patients with whom they had a professional relationship. In contrast, patients rated the usability and functionality of the system favorably. CONCLUSION: High-assurance systems that serve both patients and providers will need to address differing expectations regarding security and ease of use. (+info)