Bøger af and Medicine National Academies of Sciences

On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects--making them both transparent and accessible to others--raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.

In recent years, the field of oncology has witnessed a number of technological advances, including more precise radiation therapy and minimally invasive surgical techniques. Three-dimensional (3D), stereotactic, and proton-beam radiation therapy, as well as laparoscopy and robotic surgery, can enhance clinician's ability to treat conditions that were clinically challenging with conventional technologies, and may improve clinical outcomes or reduce treatment-related problems for some patients. Both patients and physicians seek access to these new technologies, which are rapidly being adopted into standard clinical practice. Such demand is often propelled by marketing that portrays the new technologies as the latest and greatest treatments available. However, evidence is often lacking to support these claims, and these novel technologies usually come with higher price tags and are often used to treat patients who might have achieved similar benefits from less expensive, conventional treatment.The increased cost of novel treatments without adequate assessment of how they affect patient outcomes is a pressing concern given that inappropriate use of expensive technologies is one of the key factors that threaten the affordability of cancer care in the United States. To explore these issues further, the National Cancer Policy Forum (NCPF) of the Institute of Medicine organized a workshop in July 2015. This is the third NCPF workshop in a series examining the affordability of cancer care. Participants explored clinical benefits and comparative effectiveness of emerging advanced technologies for cancer treatment in radiation therapy and surgery and potential strategies to assess the value and promote optimal use of new technologies in cancer treatment. This report summarizes the presentations and discussions from the workshop.

Publicly available statistics from government agencies that are credible, relevant, accurate, and timely are essential for policy makers, individuals, households, businesses, academic institutions, and other organizations to make informed decisions. Even more, the effective operation of a democratic system of government depends on the unhindered flow of statistical information to its citizens.In the United States, federal statistical agencies in cabinet departments and independent agencies are the governmental units whose principal function is to compile, analyze, and disseminate information for such statistical purposes as describing population characteristics and trends, planning and monitoring programs, and conducting research and evaluation. The work of these agencies is coordinated by the U.S. Office of Management and Budget. Statistical agencies may acquire information not only from surveys or censuses of people and organizations, but also from such sources as government administrative records, private-sector datasets, and Internet sources that are judged of suitable quality and relevance for statistical use. They may conduct analyses, but they do not advocate policies or take partisan positions. Statistical purposes for which they provide information relate to descriptions of groups and exclude any interest in or identification of an individual person, institution, or economic unit.Four principles are fundamental for a federal statistical agency: relevance to policy issues, credibility among data users, trust among data providers, and independence from political and other undue external influence. Principles and Practices for a Federal Statistical Agency: Sixth Edition presents and comments on these principles as theyve been impacted by changes in laws, regulations, and other aspects of the environment of federal statistical agencies over the past 4 years.