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| Author | : Carolyn Adams |
| Publisher | : Cambridge University Press |
| Total Pages | : 279 |
| Release | : 2022-06-09 |
| Genre | : Law |
| ISBN | : 1108619916 |
Download Sharing Linked Data for Health Research Book in PDF, ePub and Kindle
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
| Author | : Carolyn Adams |
| Publisher | : |
| Total Pages | : 0 |
| Release | : 2022 |
| Genre | : Data protection |
| ISBN | : 9781108445368 |
Download Sharing Linked Data for Health Research Book in PDF, ePub and Kindle
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address "wicked problems" in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
| Author | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 334 |
| Release | : 2009-03-24 |
| Genre | : Computers |
| ISBN | : 0309124999 |
Download Beyond the HIPAA Privacy Rule Book in PDF, ePub and Kindle
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.
| Author | : National Academies of Sciences, Engineering, and Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 126 |
| Release | : 2015-09-18 |
| Genre | : Science |
| ISBN | : 0309378125 |
Download Sharing Research Data to Improve Public Health in Africa Book in PDF, ePub and Kindle
Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.
| Author | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 236 |
| Release | : 2015-04-20 |
| Genre | : Medical |
| ISBN | : 0309316324 |
Download Sharing Clinical Trial Data Book in PDF, ePub and Kindle
Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research-from funders, to researchers, to journals, to physicians, and ultimately, to patients.
| Author | : Agency for Healthcare Research and Quality/AHRQ |
| Publisher | : Government Printing Office |
| Total Pages | : 396 |
| Release | : 2014-04-01 |
| Genre | : Medical |
| ISBN | : 1587634333 |
Download Registries for Evaluating Patient Outcomes Book in PDF, ePub and Kindle
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.
| Author | : Ivy Bourgeault |
| Publisher | : SAGE |
| Total Pages | : 788 |
| Release | : 2010-08-19 |
| Genre | : Social Science |
| ISBN | : 1446248461 |
Download The SAGE Handbook of Qualitative Methods in Health Research Book in PDF, ePub and Kindle
The Sage Handbook of Qualitative Methods in Health Research is a comprehensive and authoritative source on qualitative research methods. The Handbook compiles accessible yet vigorous academic contributions by respected academics from the fast-growing field of qualitative methods in health research and consists of: - A series of case studies in the ways in which qualitative methods have contributed to the development of thinking in fields relevant to policy and practice in health care. - A section examining the main theoretical sources drawn on by qualitative researchers. - A section on specific techniques for the collection of data. - A section exploring issues relevant to the strategic place of qualitative research in health care environments. The Sage Handbook of Qualitative Methods in Health Research is an invaluable source of reference for all students, researchers and practitioners with a background in the health professions or health sciences.
| Author | : Katie Harron |
| Publisher | : John Wiley & Sons |
| Total Pages | : 288 |
| Release | : 2015-09-22 |
| Genre | : Medical |
| ISBN | : 1119072468 |
Download Methodological Developments in Data Linkage Book in PDF, ePub and Kindle
A comprehensive compilation of new developments in data linkage methodology The increasing availability of large administrative databases has led to a dramatic rise in the use of data linkage, yet the standard texts on linkage are still those which describe the seminal work from the 1950-60s, with some updates. Linkage and analysis of data across sources remains problematic due to lack of discriminatory and accurate identifiers, missing data and regulatory issues. Recent developments in data linkage methodology have concentrated on bias and analysis of linked data, novel approaches to organising relationships between databases and privacy-preserving linkage. Methodological Developments in Data Linkage brings together a collection of contributions from members of the international data linkage community, covering cutting edge methodology in this field. It presents opportunities and challenges provided by linkage of large and often complex datasets, including analysis problems, legal and security aspects, models for data access and the development of novel research areas. New methods for handling uncertainty in analysis of linked data, solutions for anonymised linkage and alternative models for data collection are also discussed. Key Features: Presents cutting edge methods for a topic of increasing importance to a wide range of research areas, with applications to data linkage systems internationally Covers the essential issues associated with data linkage today Includes examples based on real data linkage systems, highlighting the opportunities, successes and challenges that the increasing availability of linkage data provides Novel approach incorporates technical aspects of both linkage, management and analysis of linked data This book will be of core interest to academics, government employees, data holders, data managers, analysts and statisticians who use administrative data. It will also appeal to researchers in a variety of areas, including epidemiology, biostatistics, social statistics, informatics, policy and public health.
| Author | : Marcelo Corrales Compagnucci |
| Publisher | : Springer Nature |
| Total Pages | : 211 |
| Release | : 2024-01-02 |
| Genre | : Law |
| ISBN | : 9819965403 |
Download The Law and Ethics of Data Sharing in Health Sciences Book in PDF, ePub and Kindle
Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
| Author | : Greg Guest |
| Publisher | : SAGE |
| Total Pages | : 833 |
| Release | : 2015 |
| Genre | : Medical |
| ISBN | : 1452241333 |
Download Public Health Research Methods Book in PDF, ePub and Kindle
Providing a comprehensive foundation for planning, executing, and monitoring public health research of all types, this book goes beyond traditional epidemiologic research designs to cover technology-based approaches emerging in the new public health landscape.
