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Sharing Linked Data For Health Research
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Book Synopsis Sharing Linked Data for Health Research by : Carolyn Adams
Download or read book Sharing Linked Data for Health Research written by Carolyn Adams and published by . This book was released on 2022 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Sharing Linked Data for Health Research by : Carolyn Adams
Download or read book Sharing Linked Data for Health Research written by Carolyn Adams and published by Cambridge University Press. This book was released on 2022-06-09 with total page 279 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Sharing Clinical Trial Data by : Institute of Medicine
Download or read book Sharing Clinical Trial Data written by Institute of Medicine and published by National Academies Press. This book was released on 2015-04-20 with total page 236 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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 :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309378125 Total Pages :126 pages Book Rating :4.3/5 (93 download)
Book Synopsis Sharing Research Data to Improve Public Health in Africa by : National Academies of Sciences, Engineering, and Medicine
Download or read book Sharing Research Data to Improve Public Health in Africa written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-09-18 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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 :Agency for Healthcare Research and Quality/AHRQ Publisher :Government Printing Office ISBN 13 :1587634333 Total Pages :385 pages Book Rating :4.5/5 (876 download)
Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ
Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Beyond the HIPAA Privacy Rule by : Institute of Medicine
Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis The SAGE Handbook of Qualitative Methods in Health Research by : Ivy Bourgeault
Download or read book The SAGE Handbook of Qualitative Methods in Health Research written by Ivy Bourgeault and published by SAGE. This book was released on 2010-08-19 with total page 788 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis The Law and Ethics of Data Sharing in Health Sciences by : Marcelo Corrales Compagnucci
Download or read book The Law and Ethics of Data Sharing in Health Sciences written by Marcelo Corrales Compagnucci and published by Springer Nature. This book was released on 2024-01-02 with total page 211 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Methodological Developments in Data Linkage by : Katie Harron
Download or read book Methodological Developments in Data Linkage written by Katie Harron and published by John Wiley & Sons. This book was released on 2015-09-22 with total page 288 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Secondary Analysis of Electronic Health Records by : MIT Critical Data
Download or read book Secondary Analysis of Electronic Health Records written by MIT Critical Data and published by Springer. This book was released on 2016-09-09 with total page 435 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book trains the next generation of scientists representing different disciplines to leverage the data generated during routine patient care. It formulates a more complete lexicon of evidence-based recommendations and support shared, ethical decision making by doctors with their patients. Diagnostic and therapeutic technologies continue to evolve rapidly, and both individual practitioners and clinical teams face increasingly complex ethical decisions. Unfortunately, the current state of medical knowledge does not provide the guidance to make the majority of clinical decisions on the basis of evidence. The present research infrastructure is inefficient and frequently produces unreliable results that cannot be replicated. Even randomized controlled trials (RCTs), the traditional gold standards of the research reliability hierarchy, are not without limitations. They can be costly, labor intensive, and slow, and can return results that are seldom generalizable to every patient population. Furthermore, many pertinent but unresolved clinical and medical systems issues do not seem to have attracted the interest of the research enterprise, which has come to focus instead on cellular and molecular investigations and single-agent (e.g., a drug or device) effects. For clinicians, the end result is a bit of a “data desert” when it comes to making decisions. The new research infrastructure proposed in this book will help the medical profession to make ethically sound and well informed decisions for their patients.
Book Synopsis Public Health Research Methods by : Greg Guest
Download or read book Public Health Research Methods written by Greg Guest and published by SAGE. This book was released on 2015 with total page 833 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Author :Agency for and Quality Publisher :Createspace Independent Publishing Platform ISBN 13 :9781505859430 Total Pages :0 pages Book Rating :4.8/5 (594 download)
Book Synopsis Linking Data for Health Services Research by : Agency for and Quality
Download or read book Linking Data for Health Services Research written by Agency for and Quality and published by Createspace Independent Publishing Platform. This book was released on 2014-12-31 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Health registries greatly enhance health services research, especially when linked with other data sources such as administrative claims. Recently, concerns about patient privacy and data security have produced policies such as the Health Insurance Portability and Accountability Act (HIPAA) that reduce the availability of sensitive identifying information. In this context, the development of effective record linkage approaches for varying scenarios of data availability is critical. This report presents a conceptual framework and instructional information that scientifically describe the strengths and limitations of different approaches to record linkage of registries to other data sources. The report defines the requirements for high-quality record linkage of registries to other data sources and describes the strengths and limitations of different approaches. By explaining the spectrum of activities involved, it serves as an instructional guide for researchers designing new CER studies using patient registries linked with other secondary data sources. Through this report, we provide an overview of linkage from registries to administrative claims, including considerations for researchers, data managers, information technology managers, and other stakeholders who are likely to be involved in the process of data linkage. We also apply the data linkage framework to a real-world problem and discuss the results.
Book Synopsis Evidence-Based Public Health Practice by : Arlene Fink
Download or read book Evidence-Based Public Health Practice written by Arlene Fink and published by SAGE. This book was released on 2013 with total page 329 pages. Available in PDF, EPUB and Kindle. Book excerpt: Designed for students and practitioners, this practical book shows how to do evidence-based research in public health. As a great deal of evidence-based practice occurs online, it focuses on how to find, use, and interpret online sources of public health information. It also includes examples of community-based participatory research and shows how to link data with community preferences and needs.
Book Synopsis The Cambridge Handbook of Health Research Regulation by : Graeme Laurie
Download or read book The Cambridge Handbook of Health Research Regulation written by Graeme Laurie and published by . This book was released on 2021-06-09 with total page 444 pages. Available in PDF, EPUB and Kindle. Book excerpt: The definitive reference guide to designing scientifically sound and ethically robust medical research, considering legal, ethical and practical issues.
Book Synopsis Meta-Study of Qualitative Health Research by : Barbara L. Paterson
Download or read book Meta-Study of Qualitative Health Research written by Barbara L. Paterson and published by SAGE. This book was released on 2001-06 with total page 180 pages. Available in PDF, EPUB and Kindle. Book excerpt: This title provides step-by-step directions for how to conduct a meta-study, as well as recommendations for tools and standards for the application of this approach.
Book Synopsis Health and Care Data by : Dalibor Stanimirović
Download or read book Health and Care Data written by Dalibor Stanimirović and published by . This book was released on 2023 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: An indispensable prerequisite for answering research questions in health services research is the availability and accessibility of comprehensive, highquality data. It can be assumed that health services research in the coming years will be increasingly based on data linkage, i.e., the linking, or connecting, of several data sources based on suitable common key variables. A range of approaches to data collection, storage, linkage and availability exists across countries, particularly for secondary research purposes (i.e., the use of data initially collected for other purposes), such as health systems research. The main goal of this review is to develop an overview of, and gain insights into, current approaches to linking data sources in the context of health services research, with the view to inform policy, based on existing practices in highincome countries in Europe and beyond. In doing so, another objective is to provide lessons for countries looking for possible or alternative approaches to data linkage. Thirteen country case studies of data linkage approaches were selected and analysed. Rather than being comprehensive, this review aimed to identify varied and potentially useful case studies to showcase different approaches to data linkage worldwide. A conceptual framework was developed to guide the selection and description of case studies. Information was first identified and collected from publicly available sources and a profile was then created for each country and each case study; these profiles were forwarded to appropriate country experts for validation and completion. The report presents an overview of the included countries and their case studies (Chapter 2), with key data per country and case study in the appendices. This is followed by a closer look at the possibilities of using routine data (Chapter 3); the different approaches to linkage (Chapter 4); the different access routes for researchers (Chapter 5); the use of data for research from electronic patient or health records (Chapter 6); foundational considerations related to data safety, privacy and governance (Chapter 7); recent developments in cross-border data sharing and the European Health Data Space (Chapter 8); and considerations of changes and responses catalysed by the COVID-19 pandemic as related to the generation and secondary use of data (Chapter 9). The review ends with overall conclusions on the necessary characteristics of data to inform research relevant for policy and highlights some insights to inspire possible future solutions - less or more disruptive - for countries looking to expand their use of data (Chapter 10). It emphasises that investing in data linkage for secondary use will not only contribute to the strengthening of national health systems, but also promote international cooperation and contribute to the international visibility of scientific excellence.
Book Synopsis Solidarity in Biomedicine and Beyond by : Barbara Prainsack
Download or read book Solidarity in Biomedicine and Beyond written by Barbara Prainsack and published by Cambridge University Press. This book was released on 2017-01-19 with total page 359 pages. Available in PDF, EPUB and Kindle. Book excerpt: In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.
