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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.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
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.
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.
Privacy is a growing concern in the United States and around the world. The spread of the Internet and the seemingly boundaryless options for collecting, saving, sharing, and comparing information trigger consumer worries. Online practices of business and government agencies may present new ways to compromise privacy, and e-commerce and technologies that make a wide range of personal information available to anyone with a Web browser only begin to hint at the possibilities for inappropriate or unwarranted intrusion into our personal lives. Engaging Privacy and Information Technology in a Digital Age presents a comprehensive and multidisciplinary examination of privacy in the information age. It explores such important concepts as how the threats to privacy evolving, how can privacy be protected and how society can balance the interests of individuals, businesses and government in ways that promote privacy reasonably and effectively? This book seeks to raise awareness of the web of connectedness among the actions one takes and the privacy policies that are enacted, and provides a variety of tools and concepts with which debates over privacy can be more fruitfully engaged. Engaging Privacy and Information Technology in a Digital Age focuses on three major components affecting notions, perceptions, and expectations of privacy: technological change, societal shifts, and circumstantial discontinuities. This book will be of special interest to anyone interested in understanding why privacy issues are often so intractable.
v. 1. Research findings -- v. 2. Concepts and methodology -- v. 3. Implementation issues -- v. 4. Programs, tools and products.
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.
Use this book to learn how to conduct a timely and thorough Risk Analysis and Assessment documenting all risks to the confidentiality, integrity, and availability of electronic Protected Health Information (ePHI), which is a key component of the HIPAA Security Rule. The requirement is a focus area for the Department of Health and Human Services (HHS) Office for Civil Rights (OCR) during breach investigations and compliance audits. This book lays out a plan for healthcare organizations of all types to successfully comply with these requirements and use the output to build upon the cybersecurity program. With the proliferation of cybersecurity breaches, the number of healthcare providers, payers, and business associates investigated by the OCR has risen significantly. It is not unusual for additional penalties to be levied when victims of breaches cannot demonstrate that an enterprise-wide risk assessment exists, comprehensive enough to document all of the risks to ePHI. Why is it that so many covered entities and business associates fail to comply with this fundamental safeguard? Building a HIPAA Compliant Cybersecurity Program cuts through the confusion and ambiguity of regulatory requirements and provides detailed guidance to help readers: Understand and document all known instances where patient data exist Know what regulators want and expect from the risk analysis process Assess and analyze the level of severity that each risk poses to ePHI Focus on the beneficial outcomes of the process: understanding real risks, and optimizing deployment of resources and alignment with business objectives What You’ll Learn Use NIST 800-30 to execute a risk analysis and assessment, which meets the expectations of regulators such as the Office for Civil Rights (OCR) Understand why this is not just a compliance exercise, but a way to take back control of protecting ePHI Leverage the risk analysis process to improve your cybersecurity program Know the value of integrating technical assessments to further define risk management activities Employ an iterative process that continuously assesses the environment to identify improvement opportunities Who This Book Is For Cybersecurity, privacy, and compliance professionals working for organizations responsible for creating, maintaining, storing, and protecting patient information
Offering compelling practical and legal reasons why de-identification should be one of the main approaches to protecting patients' privacy, the Guide to the De-Identification of Personal Health Information outlines a proven, risk-based methodology for the de-identification of sensitive health information. It situates and contextualizes this risk-ba