Sharing Linked Data For Health Research
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| Author | : Carolyn Adams |
| Publisher | : Cambridge University Press |
| Total Pages | : 279 |
| Release | : 2022-06-09 |
| Genre | : Law |
| ISBN | : 1108619916 |
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 | : 236 |
| Release | : 2015-04-20 |
| Genre | : Medical |
| ISBN | : 0309316324 |
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 | : 385 |
| Release | : 2014-04-01 |
| Genre | : Medical |
| ISBN | : 1587634333 |
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 | : National Academies of Sciences, Engineering, and Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 126 |
| Release | : 2015-09-18 |
| Genre | : Science |
| ISBN | : 0309378125 |
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 | : National Academies of Sciences, Engineering, and Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 115 |
| Release | : 2016-05-29 |
| Genre | : Science |
| ISBN | : 030937085X |
On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects-making them both transparent and accessible to others-raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.
| Author | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 334 |
| Release | : 2009-03-24 |
| Genre | : Computers |
| ISBN | : 0309124999 |
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 | : Agency for and Quality |
| Publisher | : Createspace Independent Publishing Platform |
| Total Pages | : 0 |
| Release | : 2014-12-31 |
| Genre | : Linked data |
| ISBN | : 9781505859430 |
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.
| Author | : Katie Harron |
| Publisher | : John Wiley & Sons |
| Total Pages | : 288 |
| Release | : 2015-09-22 |
| Genre | : Medical |
| ISBN | : 1119072468 |
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 | : Greg Guest |
| Publisher | : SAGE |
| Total Pages | : 833 |
| Release | : 2015 |
| Genre | : Medical |
| ISBN | : 1452241333 |
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 | : Carolyn Adams |
| Publisher | : |
| Total Pages | : 0 |
| Release | : 2022 |
| Genre | : Data protection |
| ISBN | : 9781108445368 |
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.
