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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.
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-based methodology and provides a general overview of its steps. The book supplies a detailed case for why de-identification is important as well as best practices to help you pin point when it is necessary to apply de-identification in the disclosure of personal health information. It also: Outlines practical methods for de-identification Describes how to measure re-identification risk Explains how to reduce the risk of re-identification Includes proofs and supporting reference material Focuses only on transformations proven to work on health information—rather than covering all possible approaches, whether they work in practice or not Rated the top systems and software engineering scholar worldwide by The Journal of Systems and Software, Dr. El Emam is one of only a handful of individuals worldwide qualified to de-identify personal health information for secondary use under the HIPAA Privacy Rule Statistical Standard. In this book Dr. El Emam explains how we can make health data more accessible—while protecting patients’ privacy and complying with current regulations.
This book provides an analysis of the ways in which the BAC has established an ethical framework for biomedical research in Singapore, following the launch of the Biomedical Sciences Initiative by the Singapore Government. The editors and authors have an intimate knowledge of the working of the BAC, and the focus of the book includes the ways in which international forces have influenced the form and substance of bioethics in Singapore. Together, the authors offer a comparative account of the institutionalisation of biomedical research ethics in Singapore, considered in the wider context of international regulatory efforts. The book reviews the work of the BAC by placing it within the broader cultural, social and political discourses that have emerged in relation to the life sciences since the turn of the 21st century. This book is not primarily intended to be a retrospect or an appraisal of the contribution of the BAC, though this is one aspect of it. Rather, the main intention is to make a substantive contribution to the rapidly emerging field of bioethics. Ethical discussions in the book include consideration of stem cell research and cloning, genetics and research with human participants, and focus on likely future developments as well as the past.Many of the contributors of the book have been personally involved in this work, and hence they write with an authoritative first-hand knowledge that scholars in bioethics and public policy may appreciate. As indicated above, the book also explains the way in which ethics and science ? international and local ? have interacted in a policy setting. Scholars and policy makers may find the Singaporean experience to be a valuable resource, as the approach has been to make the ethical governance of research in Singapore consistent with international best practice while observing the requirements of a properly localised application of universally accepted principles. In addition, at least three chapters (the first three chapters in particular) are accessible to the lay reader interested in the development of bioethics and biomedical sciences, both inside and outside Singapore, from 2000 (the year in which the BAC was established). Both scholars and interested lay readers are therefore likely to find this publication a valuable reference.
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.