Improving Health Professionals Access To Information

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.

Consumer health websites have garnered considerable media attention, but only begin to scratch the surface of the more pervasive transformations the Internet could bring to health and health care. Networking Health examines ways in which the Internet may become a routine part of health care delivery and payment, public health, health education, and biomedical research. Building upon a series of site visits, this book: Weighs the role of the Internet versus private networks in uses ranging from the transfer of medical images to providing video-based medical consultations at a distance. Reviews technical challenges in the areas of quality of service, security, reliability, and access, and looks at the potential utility of the next generation of online technologies. Discusses ways health care organizations can use the Internet to support their strategic interests and explores barriers to a broader deployment of the Internet. Recommends steps that private and public sector entities can take to enhance the capabilities of the Internet for health purposes and to prepare health care organizations to adopt new Internet-based applications.

Accompanying CD-Rom has same title as book.

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.

The environment is increasingly recognized as having a powerful effect on human and ecological health, as well as on specific types of human morbidity, mortality, and disability. While the public relies heavily on federal and state regulatory agencies for protection from exposures to hazardous substances, it often looks to health professionals for information about routes of exposure and the nature and extent of associated adverse health consequences. However, most health professionals acquire only a minimal knowledge of toxicology during their education and training. In 1967 the National Library of Medicine (NLM) created an information resource, known today as the Toxicology and Environmental Health Information Program (TEHIP). In 1995 the NLM asked the Institute of Medicine to examine the accessiblity and utility of the TEHIP databases for the work of health professionals. This resulting volume contains chapters on TEHIP and other toxicology and environmental health databases, on understanding the toxicology and environmental health information needs of health professionals, on increasing awareness of information resources through training and outreach, on accessing and navigating the TEHIP databases, and on program issues and future directions.