Sharing Health Data

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309316324
Total Pages : 304 pages
Book Rating : 4.23/5 ( download)

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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 304 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 : Carolyn Adams
Publisher : Cambridge University Press
ISBN 13 : 1108619916
Total Pages : 279 pages
Book Rating : 4.12/5 ( download)

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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.

Author : Sen, Devjani
Publisher : IGI Global
ISBN 13 : 1799834891
Total Pages : 335 pages
Book Rating : 4.92/5 ( download)

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Download or read book Privacy Concerns Surrounding Personal Information Sharing on Health and Fitness Mobile Apps written by Sen, Devjani and published by IGI Global. This book was released on 2020-08-07 with total page 335 pages. Available in PDF, EPUB and Kindle. Book excerpt: Health and fitness apps collect various personal information including name, email address, age, height, weight, and in some cases, detailed health information. When using these apps, many users trustfully log everything from diet to sleep patterns. However, by sharing such personal information, end-users may make themselves targets to misuse of this information by unknown third parties, such as insurance companies. Despite the important role of informed consent in the creation of health and fitness applications, the intersection of ethics and information sharing is understudied and is an often-ignored topic during the creation of mobile applications. Privacy Concerns Surrounding Personal Information Sharing on Health and Fitness Mobile Apps is a key reference source that provides research on the dangers of sharing personal information on health and wellness apps, as well as how such information can be used by employers, insurance companies, advertisers, and other third parties. While highlighting topics such as data ethics, privacy management, and information sharing, this publication explores the intersection of ethics and privacy using various quantitative, qualitative, and critical analytic approaches. It is ideally designed for policymakers, software developers, mobile app designers, legal specialists, privacy analysts, data scientists, researchers, academicians, and upper-level students.

Author : Agency for Healthcare Research and Quality/AHRQ
Publisher : Government Printing Office
ISBN 13 : 1587634333
Total Pages : 396 pages
Book Rating : 4.38/5 ( download)

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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 396 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.

Author : Khaled El Emam
Publisher : Trafford Publishing
ISBN 13 : 1466980494
Total Pages : 253 pages
Book Rating : 4.95/5 ( download)

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Download or read book Risky Business: Sharing Health Data While Protecting Privacy written by Khaled El Emam and published by Trafford Publishing. This book was released on 2013-03-04 with total page 253 pages. Available in PDF, EPUB and Kindle. Book excerpt: Due to the digitization of medical records, more and more health data is readily available. This dynamic has created many opportunities to unlock this information and use it to improve medical practice, and through research and surveillance understand the effectiveness and side effects of drugs and medical devices to ultimately improve the public’s health. This data can also be used for commercial purposes such as sales and marketing. However, this newfound utility raises some profound questions about how this data ought to be used and how it will impact personal privacy. Unless we are able to address these privacy issues in a convincing and defensible way, there will be increased breaches of personal privacy. This will provoke regulators to impose new rules limiting the use and disclosure of health data for secondary purposes, patients increasingly to adopt privacy protective behaviours because they no longer trust how their health information is being managed, or healthcare providers to be reluctant to share their patients’ data. By adopting responsible data sharing practices, researchers, companies and the general public can gain the benefits and the promise of big data analytics without sacrificing personal privacy or infringing upon law or regulation. Risky Business – Sharing Health Data While Protecting Privacy illustrates how this goal can be achieved. Bringing articles from a diverse collection of health data experts to inform the reader on contemporary policy, legal and technical issues surrounding health information privacy and data sharing. It is a uniquely practical work to inform the reader on how best – and how not to – share health data in the US and Canada.

Author : Institute of Medicine
Publisher :
ISBN 13 : 9780309303606
Total Pages : 0 pages
Book Rating : 4.05/5 ( download)

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Download or read book The Impacts of the Affordable Care Act on Preparedness Resources and Programs written by Institute of Medicine and published by . This book was released on 2014 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Many of the elements of the Affordable Care Act (ACA) went into effect in 2014, and with the establishment of many new rules and regulations, there will continue to be significant changes to the United States health care system. It is not clear what impact these changes will have on medical and public health preparedness programs around the country. Although there has been tremendous progress since 2005 and Hurricane Katrina, there is still a long way to go to ensure the health security of the Country. There is a commonly held notion that preparedness is separate and distinct from everyday operations, and that it only affects emergency departments. But time and time again, catastrophic events challenge the entire health care system, from acute care and emergency medical services down to the public health and community clinic level, and the lack of preparedness of one part of the system places preventable stress on other components. The implementation of the ACA provides the opportunity to consider how to incorporate preparedness into all aspects of the health care system. The Impacts of the Affordable Care Act on Preparedness Resources and Programs is the summary of a workshop convened by the Institute of Medicine's Forum on Medical and Public Health Preparedness for Catastrophic Events in November 2013 to discuss how changes to the health system as a result of the ACA might impact medical and public health preparedness programs across the nation. This report discusses challenges and benefits of the Affordable Care Act to disaster preparedness and response efforts around the country and considers how changes to payment and reimbursement models will present opportunities and challenges to strengthen disaster preparedness and response capacities.

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309378125
Total Pages : 102 pages
Book Rating : 4.23/5 ( download)

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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 102 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 : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309268745
Total Pages : 157 pages
Book Rating : 4.45/5 ( download)

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Download or read book Sharing Clinical Research Data written by Institute of Medicine and published by National Academies Press. This book was released on 2013-06-07 with total page 157 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.

Author : Marcelo Corrales Compagnucci
Publisher : Springer Nature
ISBN 13 : 9819965403
Total Pages : 211 pages
Book Rating : 4.03/5 ( download)

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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.

Author : National Academy of Medicine
Publisher :
ISBN 13 : 9780309704977
Total Pages : 0 pages
Book Rating : 4.79/5 ( download)

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Download or read book Sharing Health Data written by National Academy of Medicine and published by . This book was released on 2023-08-31 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing health data and information across stakeholder groups is the bedrock of a learning health system. As data and information are increasingly combined across various sources, their generative value to transform health, health care, and health equity increases significantly. Health data have proven their centrality in guiding action to change the course of individual and population health, if properly stewarded and used. In the context of the COVID-19 pandemic, both data and a lack of data illuminated profound shortcomings that affected health care and health equity. Yet, a silver lining of the pandemic was a surge in collaboration among data holders in public health, health care, and technology firms, suggesting that an evolution in health data sharing is visible and tangible. This Special Publication features some of these novel data-sharing collaborations, and has been developed to provide practical context and implementation guidance that is critical to advancing the lessons learned identified in its parent NAM Special Publication, Health Data Sharing: Building a Foundation of Stakeholder Trust. The focus of this publication is to identify and describe exemplar groups to dispel the myth that sharing health data more broadly is impossible and illuminate the innovative approaches that are being taken to make progress in the current environment. It also serves as a resource for those waiting in the wings, showing how barriers were addressed and harvesting lessons and insights from those on the front lines. In the meantime, knowledge is already available to foster better health care and health outcomes. The examples described in this volume suggest how intentional attention to health data sharing can enable unparalleled advances, securing a healthier and more equitable future for all.