Medical Records Confidentiality In The Modern Delivery Of Health Care

Western societies generally recognize both a legal and a moral right to privacy. However, at the present time there is no settled opin ion in the United States regarding how these rights should relate to medical information. On the one hand, virtually everyone agrees that one' s medical records should not be open to just any interested person' s inspection. On the other hand, most also agree that some sacrifices in medical privacy are necessary for scientific advancement, public health protection, and other social goals. However, what limits should be set upon those sacrifices, and how those limits should be determined, have long been issues of debate. In recent years this debate has intensified. There are a variety ofreasons for this; to mention only three: (1) Over the years the US health care delivery system has become increasingly complex, and with this complexity there has come a need for more and more people to have access to patients' medical records. With each transference of information, breaches in confidentiality become more likely. (2) Medical costs have risen at an alarming rate. This makes health insurance a virtual necessity for adequate medical care, and people worry that they will be denied employment and/or medical cov erage if certain sorts of medical information are not kept strictly confi dential. (3) Finally, many medical records are now kept in computer files, and the impossibility of guaranteeing confidentiality for files of this sort is a constant worry.

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.

This series is directed to health care professionals who are leading the tra- formation of health care by using information and knowledge. Launched in 1988 as Computers in Health Care, the series offers a broad range of titles: some addressed to specific professions such as nursing, medicine, and health administration; others to special areas of practice such as trauma and radi- ogy. Still other books in the series focus on interdisciplinary issues, such as the computer-based patient record, electronic health records, and networked health care systems. Renamed Health Informatics in 1998 to reflect the rapid evolution in the discipline now known as health informatics, the series will continue to add titles that contribute to the evolution of the field. In the series, eminent - perts, serving as editors or authors, offer their accounts of innovations in health informatics. Increasingly, these accounts go beyond hardware and so- ware to address the role of information in influencing the transformation of healthcare delivery systems around the world. The series also increasingly focuses on “peopleware” and the organizational, behavioral, and societal changes that accompany the diffusion of information technology in health services environments.

Most industries have plunged into data automation, but health care organizations have lagged in moving patients' medical records from paper to computers. In its first edition, this book presented a blueprint for introducing the computer-based patient record (CPR). The revised edition adds new information to the original book. One section describes recent developments, including the creation of a computer-based patient record institute. An international chapter highlights what is new in this still-emerging technology. An expert committee explores the potential of machine-readable CPRs to improve diagnostic and care decisions, provide a database for policymaking, and much more, addressing these key questions: Who uses patient records? What technology is available and what further research is necessary to meet users' needs? What should government, medical organizations, and others do to make the transition to CPRs? The volume also explores such issues as privacy and confidentiality, costs, the need for training, legal barriers to CPRs, and other key topics.

Witnesses: Bob Amdur, Dartmouth Med. School; Dawn Gencarelli, Harvard Pilgrim Health Care; Margaret Hamburg, Assist. Sec. for Planning & Eval., Dept. of HHS; Lana Skirboll, Assoc. Dir. for Science Policy, NIH; John Eisenberg, Agency for Health Care Policy & Res.; Steven Jacobsen, Mayo Fdn.; Chris Koyanagi, Consumer Coalition for Health Privacy; Daniel Krinsky, Ritzman Pharmacies; Terry Latanich, Merck-Medco; Roberta Meyer, Amer. Council of Life Insur.; Abbey Meyers, Nat. Org. of Rare Disorders; Mark O'Keefe, Comm. of Insur., Montana; David Stump, Genentech Fellow; Fran Visco, Nat. Breast Cancer Coalition; & Kepa Zubeldia, Envoy Corp.

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.