Expanding Access to Research Data

Expanding Access to Research Data
Author: National Research Council
Publisher: National Academies Press
Total Pages: 133
Release: 2005-12-11
Genre: Computers
ISBN: 0309100127
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Policy makers need information about the nationâ€"ranging from trends in the overall economy down to the use by individuals of Medicareâ€"in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data accessâ€" including restricted access to confidential data and unrestricted access to appropriately altered public-use dataâ€"must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel's recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.

Expanding Access to Research Data

Expanding Access to Research Data
Author: National Research Council
Publisher: National Academies Press
Total Pages: 132
Release: 2005-11-11
Genre: Computers
ISBN: 0309164958
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Policy makers need information about the nationâ€"ranging from trends in the overall economy down to the use by individuals of Medicareâ€"in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data accessâ€" including restricted access to confidential data and unrestricted access to appropriately altered public-use dataâ€"must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel's recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.

Expanding Access to Research Data

Expanding Access to Research Data
Author: Panel on Data Access for Research Purposes
Publisher: National Academies Press
Total Pages: 142
Release: 2005-11-11
Genre: Computers
ISBN: 9780309100120
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Policy makers need information about the nation—ranging from trends in the overall economy down to the use by individuals of Medicare—in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data access— including restricted access to confidential data and unrestricted access to appropriately altered public-use data—must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel’s recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.

Managing Scientific Information and Research Data

Managing Scientific Information and Research Data
Author: Svetla Baykoucheva
Publisher: Chandos Publishing
Total Pages: 163
Release: 2015-07-14
Genre: Business & Economics
ISBN: 0081002378
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Innovative technologies are changing the way research is performed, preserved, and communicated. Managing Scientific Information and Research Data explores how these technologies are used and provides detailed analysis of the approaches and tools developed to manage scientific information and data. Following an introduction, the book is then divided into 15 chapters discussing the changes in scientific communication; new models of publishing and peer review; ethics in scientific communication; preservation of data; discovery tools; discipline-specific practices of researchers for gathering and using scientific information; academic social networks; bibliographic management tools; information literacy and the information needs of students and researchers; the involvement of academic libraries in eScience and the new opportunities it presents to librarians; and interviews with experts in scientific information and publishing. Promotes innovative technologies for creating, sharing and managing scientific content Presents new models of scientific publishing, peer review, and dissemination of information Serves as a practical guide for researchers, students, and librarians on how to discover, filter, and manage scientific information Advocates for the adoption of unique author identifiers such as ORCID and ResearcherID Looks into new tools that make scientific information easy to discover and manage Shows what eScience is and why it is becoming a priority for academic libraries Demonstrates how Electronic Laboratory Notebooks can be used to record, store, share, and manage research data Shows how social media and the new area of Altmetrics increase researchers’ visibility and measure attention to their research Directs to sources for datasets Provides directions on choosing and using bibliographic management tools Critically examines the metrics used to evaluate research impact Aids strategic thinking and informs decision making

Improving Access to and Confidentiality of Research Data

Improving Access to and Confidentiality of Research Data
Author: National Research Council
Publisher: National Academies Press
Total Pages: 74
Release: 2000-08-11
Genre: Social Science
ISBN: 0309171598
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Improving Access to and Confidentiality of Research Data summarizes a workshop convened by the Committee on National Statistics (CNSTAT) to promote discussion about methods for advancing the often conflicting goals of exploiting the research potential of microdata and maintaining acceptable levels of confidentiality. This report outlines essential themes of the access versus confidentiality debate that emerged during the workshop. Among these themes are the tradeoffs and tensions between the needs of researchers and other data users on the one hand and confidentiality requirements on the other; the relative advantages and costs of data perturbation techniques (applied to facilitate public release) versus restricted access as tools for improving security; and the need to quantify disclosure risksâ€"both absolute and relativeâ€"created by researchers and research data, as well as by other data users and other types of data.

Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age

Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 179
Release: 2009-11-17
Genre: Computers
ISBN: 0309147824
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As digital technologies are expanding the power and reach of research, they are also raising complex issues. These include complications in ensuring the validity of research data; standards that do not keep pace with the high rate of innovation; restrictions on data sharing that reduce the ability of researchers to verify results and build on previous research; and huge increases in the amount of data being generated, creating severe challenges in preserving that data for long-term use. Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age examines the consequences of the changes affecting research data with respect to three issues - integrity, accessibility, and stewardship-and finds a need for a new approach to the design and the management of research projects. The report recommends that all researchers receive appropriate training in the management of research data, and calls on researchers to make all research data, methods, and other information underlying results publicly accessible in a timely manner. The book also sees the stewardship of research data as a critical long-term task for the research enterprise and its stakeholders. Individual researchers, research institutions, research sponsors, professional societies, and journals involved in scientific, engineering, and medical research will find this book an essential guide to the principles affecting research data in the digital age.

Public Access to Federally-funded Research

Public Access to Federally-funded Research
Author: United States. Congress. House. Committee on Oversight and Government Reform. Subcommittee on Information Policy, Census, and National Archives
Publisher:
Total Pages: 168
Release: 2011
Genre: Law
ISBN:
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Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 334
Release: 2009-03-24
Genre: Computers
ISBN: 0309124999
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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.

Expanding Access to Medicaid Data for Research

Expanding Access to Medicaid Data for Research
Author: Audra Wenzlow
Publisher:
Total Pages: 88
Release: 2010
Genre:
ISBN:
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As the primary source of person-level data on the Medicaid program, the Medicaid Analytic Extract (MAX) is a critical Medicaid research tool that is being used widely by the research community. However, the size and complexity of the MAX files have limited their use for some members of the research community, especially those with limited computing capacity. To facilitate wider use of MAX, the Centers for Medicare & Medicaid Services (CMS) is considering developing a sample of MAX data, referred to as Mini-MAX. A Medicaid sample has the potential to make it easier for current users to design and conduct MAX studies and could make MAX data accessible to a broader community of Medicaid researchers, policymakers, program administrators, and advocacy group - including those without mainframe access or who are otherwise unable to process MAX due to its size or complexity.