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Information Practice (information + practice)
Selected AbstractsInformation that informs rather than alienates families with disabled children: developing a model of good practiceHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 2 2002Wendy Mitchell PhD Abstract The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's ,quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. However, although there has been considerable research highlighting parents' information needs, there has been significantly less exploration of how parents would actually like to receive this information. This paper seeks to bridge this knowledge gap and also discusses the empowering potential of user-friendly information. Drawing upon data collected from focus group discussions with parents caring for children with a range of disabilities or chronic illnesses, this paper explores how the families of service users would like to receive information. In particular, it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive. Indeed, parents' desire for a combination of personal guidance and good-quality information, whether in the form of in-depth booklets or shorter directories, is viewed as being of paramount importance and, furthermore, as having an important empowering potential. [source] Measuring the value and impact of health library and information services: past reflections, future possibilitiesHEALTH INFORMATION & LIBRARIES JOURNAL, Issue 2007Joanne Gard Marshall Objectives:, To summarize the context, history and results of research studies conducted on the value and impact of health library and information services by the author since 1975 and to use this as a basis for examining ongoing developments related to evaluation research. To provide a comprehensive bibliography of library value and impact studies. Methods:, Literature review and background based on personal involvement in the studies under discussion. Results:, The author's studies demonstrate an ongoing evolution of value and impact studies since the mid-1970s. In health sciences libraries, the approach taken to measuring value and impact has been strongly influenced by the type of research being conducted in the health sciences field as a whole. As a result, health sciences library researchers have become early adopters of methods that incorporate outcome and impact measures and rigorous research designs, and the concept of evidence-based library and information practice. The paper recommends that a range of research approaches from various disciplines be used to guide future evaluation research. Conclusions:, Value and impact studies will continue to be important resources for evidence-based practice as health information professionals deal with evolving user needs and new ways of delivering information to a variety of audiences. [source] Australian supermodel?,A practical example of evidence-based library and information practice (EBLIP)HEALTH INFORMATION & LIBRARIES JOURNAL, Issue 1 2006Andrew Booth First page of article [source] Data Governance and Stewardship: Designing Data Stewardship Entities and Advancing Data AccessHEALTH SERVICES RESEARCH, Issue 5p2 2010Sara Rosenbaum U.S. health policy is engaged in a struggle over access to health information, in particular, the conditions under which information should be accessible for research when appropriate privacy protections and security safeguards are in place. The expanded use of health information,an inevitable step in an information age,is widely considered be essential to health system reform. Models exist for the creation of data-sharing arrangements that promote proper use of information in a safe and secure environment and with attention to ethical standards. Data stewardship is a concept with deep roots in the science and practice of data collection, sharing, and analysis. Reflecting the values of fair information practice, data stewardship denotes an approach to the management of data, particularly data that can identify individuals. The concept of a data steward is intended to convey a fiduciary (or trust) level of responsibility toward the data. Data governance is the process by which responsibilities of stewardship are conceptualized and carried out. As the concept of health information data stewardship advances in a technology-enabled environment, the question is whether legal barriers to data access and use will begin to give way. One possible answer may lie in defining the public interest in certain data uses, tying provider participation in federal health programs to the release of all-payer data to recognized data stewardship entities for aggregation and management, and enabling such entities to foster and enable the creation of knowledge through research. [source] Privacy and Commercial Use of Personal Data: Policy Developments in the United StatesJOURNAL OF CONTINGENCIES AND CRISIS MANAGEMENT, Issue 1 2003Priscilla Regan In the online and offline worlds, the value of personal information , especially information about commercial purchases and preferences , has long been recognised. Exchanges and uses of personal information have also long sparked concerns about privacy. Public opinion surveys consistently indicate that overwhelming majorities of the American public are concerned that they have lost all control over information about themselves and do not trust organisations to protect the privacy of their information. Somewhat smaller majorities favour federal legislation to protect privacy. Despite public support for stronger privacy protection, the prevailing policy stance for over thirty years has been one of reluctance to legislate and a preference for self-regulation by business to protect privacy. Although some privacy legislation has been adopted, policy debates about the commercial uses of personal information have been dominated largely by business concerns about intrusive government regulation, free speech and the flow of commercial information, costs, and effectiveness. Public concerns about privacy, reflected in public opinion surveys and voiced by a number of public interest groups, are often discredited because individuals seem to behave as though privacy is not important. Although people express concern about privacy, they routinely disclose personal information because of convenience, discounts and other incentives, or a lack of understanding of the consequences. This disconnect between public opinion and public behaviour has been interpreted to support a self-regulatory approach to privacy protections with emphasis on giving individuals notice and choice about information practices. In theory the self-regulatory approach also entails some enforcement mechanism to ensure that organisations are doing what they claim, and a redress mechanism by which individuals can seek compensation if they are wronged. This article analyses the course of policy formulation over the last twenty years with particular attention on how policymakers and stakeholders have used public opinion about the commercial use of personal information in formulating policy to protect privacy. The article considers policy activities in both Congress and the Federal Trade Commission that have resulted in an emphasis on "notice and consent." The article concludes that both individual behaviour and organisational behaviour are skewed in a privacy invasive direction. People are less likely to make choices to protect their privacy unless these choices are relatively easy, obvious, and low cost. If a privacy protection choice entails additional steps, most rational people will not take those steps. This appears logically to be true and to be supported by behaviour in the physical world. Organisations are unlikely to act unilaterally to make their practices less privacy invasive because such actions will impose costs on them that are not imposed on their competitors. Overall then, the privacy level available is less than what the norms of society and the stated preferences of people require. A consent scheme that is most protective of privacy imposes the largest burden on the individual, as well as costs to the individual, while a consent scheme that is least protective of privacy imposes the least burden on the individual, as well as fewer costs to the individual. Recent experience with privacy notices that resulted from the financial privacy provisions in Gramm-Leach-Bliley supports this conclusion. Finally, the article will consider whether the terrorist attacks of 11 September have changed public opinion about privacy and what the policy implications of any changes in public opinion are likely to be. [source] Technology, security, and individual privacy: New tools, new threats, and new public perceptionsJOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY, Issue 3 2005Lee S. Strickland Highly portable information collection and transmission technologies such as radio frequency identification (RFID) tags and smart cards are becoming ubiquitous in government and business,employed in functions including homeland security, information security, physical premises security, and even the control of goods in commerce. And, directly or indirectly, in many of these applications, it is individuals and their activities that are tracked. Yet, a significant unknown is (a) whether the public understands these technologies and the manner in which personally identifiable information may be collected, maintained, used, and disseminated; and (b) whether the public consents to these information practices. To answer these and related questions, we surveyed a select group of citizens on the uses of this technology for business as well as homeland security purposes. We found a significant lack of understanding, a significant level of distrust even in the context of homeland security applications, and a very significant consensus for governmental regulation. We conclude that a primary objective for any organization deploying these technologies is the promulgation of a comprehensive Technology Privacy Policy, and we provide detailed specifications for such an effort. [source] | ||||||||||