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| Author | : William W. Lowrance |
| Publisher | : Cambridge University Press |
| Total Pages | : 203 |
| Release | : 2012-06-21 |
| Genre | : Computers |
| ISBN | : 1107020875 |
Examines how privacy, confidentiality, consent, identifiability, safeguards and data sharing affect the pursuit of health research for the common good.
| 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 | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 208 |
| Release | : 2001-01-13 |
| Genre | : Computers |
| ISBN | : 0309071879 |
The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected.
| Author | : Patrick W. O'Carroll |
| Publisher | : Springer Science & Business Media |
| Total Pages | : 812 |
| Release | : 2003 |
| Genre | : Computers |
| ISBN | : 0387954740 |
This book is a comprehensive text about all aspects of public health informatics and information technology. This books emphasizes the essential role that public health informatics plays in implementing a population-based health approach and to addressing chronic health conditions. This book is intended for public health specialists, nurses, medical informaticians, information technology professionals, and family physicians.
| 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 | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 287 |
| Release | : 2015-01-08 |
| Genre | : Medical |
| ISBN | : 0309312450 |
Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material. Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.
| 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 | : Peter A. Singer |
| Publisher | : Cambridge University Press |
| Total Pages | : 477 |
| Release | : 2008-01-31 |
| Genre | : Medical |
| ISBN | : 1139468219 |
Medicine and health care generate many bioethical problems and dilemmas that are of great academic, professional and public interest. This comprehensive resource is designed as a succinct yet authoritative text and reference for clinicians, bioethicists, and advanced students seeking a better understanding of ethics problems in the clinical setting. Each chapter illustrates an ethical problem that might be encountered in everyday practice; defines the concepts at issue; examines their implications from the perspectives of ethics, law and policy; and then provides a practical resolution. There are 10 key sections presenting the most vital topics and clinically relevant areas of modern bioethics. International, interdisciplinary authorship and cross-cultural orientation ensure suitability for a worldwide audience. This book will assist all clinicians in making well-reasoned and defensible decisions by developing their awareness of ethical considerations and teaching the analytical skills to deal with them effectively.
| Author | : Mark A. Rothstein |
| Publisher | : Yale University Press |
| Total Pages | : 532 |
| Release | : 1997-01-01 |
| Genre | : Medical |
| ISBN | : 9780300080636 |
The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise--from research and clinical settings to workplaces, insurance offices, schools, and the courts. The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.
| Author | : Christina Munns |
| Publisher | : Taylor & Francis |
| Total Pages | : 364 |
| Release | : 2017-05-15 |
| Genre | : Medical |
| ISBN | : 1317075722 |
In order for the information society to realise its full potential, personal data has to be disclosed, used and often shared. This book explores the disclosure and sharing of data within the area of healthcare. Including an overview of how health information is currently managed, the authors argue that with changes in modern society, the idea of personal relationships with a local GP who solely holds and controls your health records is becoming rapidly outdated. The authors aim to encourage and empower patients to make informed choices about sharing their health data. They do this by developing a three-stage theoretical model for change to the roles of the NHS and the individual. The study generates debate to stimulate and inspire new models and policy, and to provoke new visions for the sharing of healthcare data. Such discussion is framed through an exploration of the changing concept of 'privacy' and 'patient control' in healthcare information management. The volume draws on best practices from Europe and the USA and combines these to form a suggested vision for the UK as an early adopter of change. The volume will be essential reading for academics in the field of privacy and data protection, as well as healthcare and informatics professionals across different jurisdictions.
