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Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.
To the uninformed, surveys appear to be an easy type of research to design and conduct, but when students and professionals delve deeper, they encounter the vast complexities that the range and practice of survey methods present. To complicate matters, technology has rapidly affected the way surveys can be conducted; today, surveys are conducted via cell phone, the Internet, email, interactive voice response, and other technology-based modes. Thus, students, researchers, and professionals need both a comprehensive understanding of these complexities and a revised set of tools to meet the challenges. In conjunction with top survey researchers around the world and with Nielsen Media Research serving as the corporate sponsor, the Encyclopedia of Survey Research Methods presents state-of-the-art information and methodological examples from the field of survey research. Although there are other "how-to" guides and references texts on survey research, none is as comprehensive as this Encyclopedia, and none presents the material in such a focused and approachable manner. With more than 600 entries, this resource uses a Total Survey Error perspective that considers all aspects of possible survey error from a cost-benefit standpoint. Key Features Covers all major facets of survey research methodology, from selecting the sample design and the sampling frame, designing and pretesting the questionnaire, data collection, and data coding, to the thorny issues surrounding diminishing response rates, confidentiality, privacy, informed consent and other ethical issues, data weighting, and data analyses Presents a Reader′s Guide to organize entries around themes or specific topics and easily guide users to areas of interest Offers cross-referenced terms, a brief listing of Further Readings, and stable Web site URLs following most entries The Encyclopedia of Survey Research Methods is specifically written to appeal to beginning, intermediate, and advanced students, practitioners, researchers, consultants, and consumers of survey-based information.
Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.
This book addresses the needs of researchers who want to conduct surveys online. Issues discussed include sampling from online populations, developing online and mobile questionnaires, and administering electronic surveys, are unique to digital surveys. Others, like creating reliable and valid survey questions, data analysis strategies, and writing the survey report, are common to all survey environments. This single resource captures the particulars of conducting digital surveys from start to finish
In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
User identification and authentication are essential parts of information security. Users must authenticate as they access their computer systems at work or at home every day. Yet do users understand how and why they are actually being authenticated, the security level of the authentication mechanism that they are using, and the potential impacts o
The escalation of security breaches involving personally identifiable information (PII) has contributed to the loss of millions of records over the past few years. Breaches involving PII are hazardous to both individuals and org. Individual harms may include identity theft, embarrassment, or blackmail. Organ. harms may include a loss of public trust, legal liability, or remediation costs. To protect the confidentiality of PII, org. should use a risk-based approach. This report provides guidelines for a risk-based approach to protecting the confidentiality of PII. The recommend. here are intended primarily for U.S. Fed. gov¿t. agencies and those who conduct business on behalf of the agencies, but other org. may find portions of the publication useful.
The Kit is for students in undergraduate and graduate classes in the social and health sciences and for individuals in the public and private sectors who are responsible for conducting and using surveys.
This basic introduction to survey research for public administration is organised around the fundamental stages of the research process - planning, design, implementation, analysis and presentation
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.