Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 334
Release: 2009-03-24
Genre: Computers
ISBN: 0309124999

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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.

Privacy and Healthcare Data

Privacy and Healthcare Data
Author: Christina Munns
Publisher: Taylor & Francis
Total Pages: 364
Release: 2017-05-15
Genre: Medical
ISBN: 1317075722

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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idea of personal relationships with a local GP who solely holds and controls your health records is becoming rapidly outdated.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.

Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes
Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
Total Pages: 396
Release: 2014-04-01
Genre: Medical
ISBN: 1587634333

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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.

Overview of the Privacy Act of 1974

Overview of the Privacy Act of 1974
Author: United States. Department of Justice. Privacy and Civil Liberties Office
Publisher:
Total Pages: 276
Release: 2010
Genre: Government publications
ISBN:

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The "Overview of the Privacy Act of 1974," prepared by the Department of Justice's Office of Privacy and Civil Liberties (OPCL), is a discussion of the Privacy Act's disclosure prohibition, its access and amendment provisions, and its agency recordkeeping requirements. Tracking the provisions of the Act itself, the Overview provides reference to, and legal analysis of, court decisions interpreting the Act's provisions.

Capturing Social and Behavioral Domains and Measures in Electronic Health Records

Capturing Social and Behavioral Domains and Measures in Electronic Health Records
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 287
Release: 2015-01-08
Genre: Medical
ISBN: 0309312450

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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.

Research Ethics for Students in the Social Sciences

Research Ethics for Students in the Social Sciences
Author: Jaap Bos
Publisher: Springer Nature
Total Pages: 294
Release: 2020-10-16
Genre: Philosophy
ISBN: 3030484157

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This open access textbook offers a practical guide into research ethics for undergraduate students in the social sciences. A step-by-step approach of the most viable issues, in-depth discussions of case histories and a variety of didactical tools will aid the student to grasp the issues at hand and help him or her develop strategies to deal with them. This book addresses problems and questions that any bachelor student in the social sciences should be aware of, including plagiarism, data fabrication and other types of fraud, data augmentation, various forms of research bias, but also peer pressure, issues with confidentiality and questions regarding conflicts of interest. Cheating, ‘free riding’, and broader issues that relate to the place of the social sciences in society are also included. The book concludes with a step-by-step approach designed to coach a student through a research application process.

Guide to Protecting the Confidentiality of Personally Identifiable Information

Guide to Protecting the Confidentiality of Personally Identifiable Information
Author: Erika McCallister
Publisher: DIANE Publishing
Total Pages: 59
Release: 2010-09
Genre: Computers
ISBN: 1437934889

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The escalation of security breaches involving personally identifiable information (PII) has contributed to the loss of millions of records over the past few years. Breaches involving PII are hazardous to both individuals and org. Individual harms may include identity theft, embarrassment, or blackmail. Organ. harms may include a loss of public trust, legal liability, or remediation costs. To protect the confidentiality of PII, org. should use a risk-based approach. This report provides guidelines for a risk-based approach to protecting the confidentiality of PII. The recommend. here are intended primarily for U.S. Fed. gov¿t. agencies and those who conduct business on behalf of the agencies, but other org. may find portions of the publication useful.

Sharing Clinical Trial Data

Sharing Clinical Trial Data
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 236
Release: 2015-04-20
Genre: Medical
ISBN: 0309316324

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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.

Data Management for Researchers

Data Management for Researchers
Author: Kristin Briney
Publisher: Pelagic Publishing Ltd
Total Pages: 312
Release: 2015-09-01
Genre: Computers
ISBN: 178427013X

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A comprehensive guide to everything scientists need to know about data management, this book is essential for researchers who need to learn how to organize, document and take care of their own data. Researchers in all disciplines are faced with the challenge of managing the growing amounts of digital data that are the foundation of their research. Kristin Briney offers practical advice and clearly explains policies and principles, in an accessible and in-depth text that will allow researchers to understand and achieve the goal of better research data management. Data Management for Researchers includes sections on: * The data problem – an introduction to the growing importance and challenges of using digital data in research. Covers both the inherent problems with managing digital information, as well as how the research landscape is changing to give more value to research datasets and code. * The data lifecycle – a framework for data’s place within the research process and how data’s role is changing. Greater emphasis on data sharing and data reuse will not only change the way we conduct research but also how we manage research data. * Planning for data management – covers the many aspects of data management and how to put them together in a data management plan. This section also includes sample data management plans. * Documenting your data – an often overlooked part of the data management process, but one that is critical to good management; data without documentation are frequently unusable. * Organizing your data – explains how to keep your data in order using organizational systems and file naming conventions. This section also covers using a database to organize and analyze content. * Improving data analysis – covers managing information through the analysis process. This section starts by comparing the management of raw and analyzed data and then describes ways to make analysis easier, such as spreadsheet best practices. It also examines practices for research code, including version control systems. * Managing secure and private data – many researchers are dealing with data that require extra security. This section outlines what data falls into this category and some of the policies that apply, before addressing the best practices for keeping data secure. * Short-term storage – deals with the practical matters of storage and backup and covers the many options available. This section also goes through the best practices to insure that data are not lost. * Preserving and archiving your data – digital data can have a long life if properly cared for. This section covers managing data in the long term including choosing good file formats and media, as well as determining who will manage the data after the end of the project. * Sharing/publishing your data – addresses how to make data sharing across research groups easier, as well as how and why to publicly share data. This section covers intellectual property and licenses for datasets, before ending with the altmetrics that measure the impact of publicly shared data. * Reusing data – as more data are shared, it becomes possible to use outside data in your research. This chapter discusses strategies for finding datasets and lays out how to cite data once you have found it. This book is designed for active scientific researchers but it is useful for anyone who wants to get more from their data: academics, educators, professionals or anyone who teaches data management, sharing and preservation. "An excellent practical treatise on the art and practice of data management, this book is essential to any researcher, regardless of subject or discipline." —Robert Buntrock, Chemical Information Bulletin