Privacy Confidentiality And Health Research

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.

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.

Examines how privacy, confidentiality, consent, identifiability, safeguards and data sharing affect the pursuit of health research for the common good.

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.

Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.

Let us not go over the old ground, let us rather prepare for what is to come. —Marcus Tullius Cicero Improvements in the health status of communities depend on effective public health and healthcare infrastructures. These infrastructures are increasingly electronic and tied to the Internet. Incorporating emerging technologies into the service of the community has become a required task for every public health leader. The revolution in information technology challenges every sector of the health enterprise. Individuals, care providers, and public health agencies can all benefit as we reshape public health through the adoption of new infor- tion systems, use of electronic methods for disease surveillance, and refor- tion of outmoded processes. However, realizing the benefits will be neither easy nor inexpensive. Technological innovation brings the promise of new ways of improving health. Individuals have become more involved in knowing about, and managing and improving, their own health through Internet access. Similarly, healthcare p- viders are transforming the ways in which they assess, treat, and document - tient care through their use of new technologies. For example, point-of-care and palm-type devices will soon be capable of uniquely identifying patients, s- porting patient care, and documenting treatment simply and efficiently.

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.