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.
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.
The Healthcare industry is one of the largest and rapidly developing industries. Over the last few years, healthcare management is changing from disease centered to patient centered. While on one side the analysis of healthcare data plays an important role in healthcare management, but on the other side the privacy of a patient’s record must be of equal concern. This book uses a research-oriented approach and focuses on privacy-based healthcare tools and technologies. It offers details on privacy laws with real-life case studies and examples, and addresses privacy issues in newer technologies such as Cloud, Big Data, and IoT. It discusses the e-health system and preserving its privacy, and the use of wearable technologies for patient monitoring, data streaming and sharing, and use of data analysis to provide various health services. This book is written for research scholars, academicians working in healthcare and data privacy domains, as well as researchers involved with healthcare law, and those working at facilities in security and privacy domains. Students and industry professionals, as well as medical practitioners might also find this book of interest.
This report identifies eight key data governance mechanisms to maximise benefits to patients and to societies from the collection, linkage and analysis of health data, and to minimise risks to both patient privacy and the security of health data.
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.
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.
Examines how privacy, confidentiality, consent, identifiability, safeguards and data sharing affect the pursuit of health research for the common good.
This volume brings together papers that offer methodologies, conceptual analyses, highlight issues, propose solutions, and discuss practices regarding privacy and data protection. It is one of the results of the eight annual International Conference on Computers, Privacy, and Data Protection, CPDP 2015, held in Brussels in January 2015. The book explores core concepts, rights and values in (upcoming) data protection regulation and their (in)adequacy in view of developments such as Big and Open Data, including the right to be forgotten, metadata, and anonymity. It discusses privacy promoting methods and tools such as a formal systems modeling methodology, privacy by design in various forms (robotics, anonymous payment), the opportunities and burdens of privacy self management, the differentiating role privacy can play in innovation. The book also discusses EU policies with respect to Big and Open Data and provides advice to policy makers regarding these topics. Also attention is being paid to regulation and its effects, for instance in case of the so-called ‘EU-cookie law’ and groundbreaking cases, such as Europe v. Facebook. This interdisciplinary book was written during what may turn out to be the final stages of the process of the fundamental revision of the current EU data protection law by the Data Protection Package proposed by the European Commission. It discusses open issues and daring and prospective approaches. It will serve as an insightful resource for readers with an interest in privacy and data protection.
With the immense amount of data that is now available online, security concerns have been an issue from the start, and have grown as new technologies are increasingly integrated in data collection, storage, and transmission. Online cyber threats, cyber terrorism, hacking, and other cybercrimes have begun to take advantage of this information that can be easily accessed if not properly handled. New privacy and security measures have been developed to address this cause for concern and have become an essential area of research within the past few years and into the foreseeable future. The ways in which data is secured and privatized should be discussed in terms of the technologies being used, the methods and models for security that have been developed, and the ways in which risks can be detected, analyzed, and mitigated. The Research Anthology on Privatizing and Securing Data reveals the latest tools and technologies for privatizing and securing data across different technologies and industries. It takes a deeper dive into both risk detection and mitigation, including an analysis of cybercrimes and cyber threats, along with a sharper focus on the technologies and methods being actively implemented and utilized to secure data online. Highlighted topics include information governance and privacy, cybersecurity, data protection, challenges in big data, security threats, and more. This book is essential for data analysts, cybersecurity professionals, data scientists, security analysts, IT specialists, practitioners, researchers, academicians, and students interested in the latest trends and technologies for privatizing and securing data.
In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.
