TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Joe Alper A2 - Rose Marie Martinez A2 - Kelly McHugh TI - Optimizing Care Systems for People with Intellectual and Developmental Disabilities: Proceedings of a Workshop SN - DO - 10.17226/26624 PY - 2022 UR - https://nap.nationalacademies.org/catalog/26624/optimizing-care-systems-for-people-with-intellectual-and-developmental-disabilities PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine AB - Approximately 7.4 million people in the United States live with an intellectual or developmental disability (IDD), defined by the Centers for Disease Control and Prevention as "a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime." Individuals with IDD and their caretakers face exceptional barriers to staying healthy and accessing appropriate health services. Among these barriers are difficulty finding care providers that are adequately trained in meeting their specialized needs, unwieldy payment structures, and a lack of coordination between the various systems of care with which patients with IDD may interact (e.g., education, social work, various segments of the health care system). The National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss promising innovations in (1) workforce development, (2) financing and payment, and (3) care coordination; and to share visions for improved systems of care. Participants noted that while many existing approaches could serve as models for improving care, large changes will need to be made in these 3 facets of the care system in order to make them accessible to all IDD patients. This publication summarizes the presentations and discussions of the workshop. ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Siobhan Addie A2 - Meredith Hackmann A2 - Theresa Wizemann A2 - Sarah Beachy TI - Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop SN - DO - 10.17226/25048 PY - 2018 UR - https://nap.nationalacademies.org/catalog/25048/implementing-and-evaluating-genomic-screening-programs-in-health-care-systems PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine AB - Genomic applications are being integrated into a broad range of clinical and research activities at health care systems across the United States. This trend can be attributed to a variety of factors, including the declining cost of genome sequencing and the potential for improving health outcomes and cutting the costs of care. The goals of these genomics-based programs may be to identify individuals with clinically actionable variants as a way of preventing disease, providing diagnoses for patients with rare diseases, and advancing research on genetic contributions to health and disease. Of particular interest are genomics- based screening programs, which will, in this publication, be clinical screening programs that examine genes or variants in unselected populations in order to identify individuals who are at an increased risk for a particular health concern (e.g., diseases, adverse drug outcomes) and who might benefit from clinical interventions. On November 1, 2017, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to explore the challenges and opportunities associated with integrating genomics-based screening programs into health care systems. This workshop was developed as a way to explore the challenges and opportunities associated with integrating genomics-based programs in health care systems in the areas of evidence collection, sustainability, data sharing, infrastructure, and equity of access. This publication summarizes the presentations and discussions from the workshop. ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Joe Alper TI - A Proposed Framework for Integration of Quality Performance Measures for Health Literacy, Cultural Competence, and Language Access Services: Proceedings of a Workshop SN - DO - 10.17226/24918 PY - 2018 UR - https://nap.nationalacademies.org/catalog/24918/a-proposed-framework-for-integration-of-quality-performance-measures-for-health-literacy-cultural-competence-and-language-access-services PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine AB - Health literacy, cultural competence, and language access services are distinct but inextricably linked concepts for delivering equitable care to all members of the increasingly diverse population of the United States. These concepts are linked, but they developed via different paths, and each has its own unique focus with regard to enabling every individual to obtain the ability to process and understand basic health information and services needed to make appropriate health care decisions. Fragmentation of these disciplines has impeded implementation of relevant measures for quality improvement and accountability. To foster an integrated approach to health literacy, cultural competency, and language access services, the Roundtable on Health Literacy initiated a project with three components: a commissioned paper to propose a framework for integrating measurements of health literacy, cultural competency, and language access; a workshop to review and discuss the framework; and a second commissioned paper that will provide a roadmap for integrating health literacy, cultural competency, and language access services as well as a revised measurement framework. Held on May 4, 2017, the workshop explored the quality performance measures for integration of health literacy, cultural competence, and language access services. This publication summarizes the presentations and discussions from the workshop. ER - TY - BOOK AU - National Research Council A2 - Julie M. Esanu A2 - Paul F. Uhlir TI - Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium SN - DO - 10.17226/11030 PY - 2004 UR - https://nap.nationalacademies.org/catalog/11030/open-access-and-the-public-domain-in-digital-data-and-information-for-science PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology KW - Computers and Information Technology AB - This symposium, which was held on March 10-11, 2003, at UNESCO headquarters in Paris, brought together policy experts and managers from the government and academic sectors in both developed and developing countries to (1) describe the role, value, and limits that the public domain and open access to digital data and information have in the context of international research; (2) identify and analyze the various legal, economic, and technological pressures on the public domain in digital data and information, and their potential effects on international research; and (3) review the existing and proposed approaches for preserving and promoting the public domain and open access to scientific and technical data and information on a global basis, with particular attention to the needs of developing countries. ER - TY - BOOK AU - National Research Council A2 - Ned D. Heindel A2 - Tina M. Masciangioli A2 - Eva von Schaper TI - Are Chemical Journals Too Expensive and Inaccessible?: A Workshop Summary to the Chemical Sciences Roundtable SN - DO - 10.17226/11288 PY - 2005 UR - https://nap.nationalacademies.org/catalog/11288/are-chemical-journals-too-expensive-and-inaccessible-a-workshop-summary PB - The National Academies Press CY - Washington, DC LA - English KW - Math, Chemistry, and Physics KW - Education AB - On October 25-26, 2005, the Chemical Sciences Roundtable held a workshop to explore issues involving those who use and contribute to chemical literature, as well as those who publish and disseminate chemical journals. As a follow-up to the workshop, a summary was written to capture the presentations and discussions that occurred during the workshop. As a forum to discuss chemistry journals within the larger context of scientific, technical and medical journal publishing, the workshop covered whether chemists and chemical engineers have unique journal needs and, if so, whether these needs are being met in the current journal publishing environment. Workshop participants also tackled how open access publishing might be applied to the chemical literature, such as to provide authors more freedom to distribute their articles after publication and allowing free access to chemical literature archives. ER - TY - BOOK TI - Electronic Scientific, Technical, and Medical Journal Publishing and Its Implications: Report of a Symposium SN - DO - 10.17226/10969 PY - 2004 UR - https://nap.nationalacademies.org/catalog/10969/electronic-scientific-technical-and-medical-journal-publishing-and-its-implications PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology KW - Computers and Information Technology AB - The Symposium on Electronic Scientific, Technical, and Medical (STM) Journals and Its Implications addressed five key areas. The first two areas addressed--costs of publication and publication business models and revenue--focused on the STM publishing enterprise as it exists today and, in particular, how it has evolved since the advent of electronic publishing. The following section reviewed copyright and licensing issues of concern to the authors and to universities. The final two sessions looked toward the future, specifically, at what publishing may be in the future and what constitutes a publication in the digital environment. ER - TY - BOOK AU - National Research Council TI - Electronic Scientific, Technical, and Medical Journal Publishing and Its Implications: Proceedings of a Symposium SN - DO - 10.17226/10983 PY - 2004 UR - https://nap.nationalacademies.org/catalog/10983/electronic-scientific-technical-and-medical-journal-publishing-and-its-implications PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology KW - Computers and Information Technology AB - This report is the proceedings of a 2003 symposium on "Electronic Scientific, Technical, and Medical Journal Publishing and Its Implications," which brought together experts in STM publishing, both producers and users of these publications, to: (1) identify the recent technical changes in publishing, and other factors, that influence the decisions of journal publishers to produce journals electronically; (2) identify the needs of the scientific, engineering, and medical community as users of journals, whether electronic or printed; (3) discuss the responses of not-for-profit and commercial STM publishers and of other stakeholders in the STM community to the opportunities and challenges posed by the shift to electronic publishing; and (4) examine the spectrum of proposals that has been put forth to respond to the needs of users as the publishing industry shifts to electronic information production and dissemination. ER - TY - BOOK AU - National Academy of Sciences AU - National Academy of Engineering AU - Institute of Medicine TI - Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age SN - DO - 10.17226/12615 PY - 2009 UR - https://nap.nationalacademies.org/catalog/12615/ensuring-the-integrity-accessibility-and-stewardship-of-research-data-in-the-digital-age PB - The National Academies Press CY - Washington, DC LA - English KW - Computers and Information Technology KW - Policy for Science and Technology KW - Education AB - As digital technologies are expanding the power and reach of research, they are also raising complex issues. These include complications in ensuring the validity of research data; standards that do not keep pace with the high rate of innovation; restrictions on data sharing that reduce the ability of researchers to verify results and build on previous research; and huge increases in the amount of data being generated, creating severe challenges in preserving that data for long-term use. Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age examines the consequences of the changes affecting research data with respect to three issues - integrity, accessibility, and stewardship-and finds a need for a new approach to the design and the management of research projects. The report recommends that all researchers receive appropriate training in the management of research data, and calls on researchers to make all research data, methods, and other information underlying results publicly accessible in a timely manner. The book also sees the stewardship of research data as a critical long-term task for the research enterprise and its stakeholders. Individual researchers, research institutions, research sponsors, professional societies, and journals involved in scientific, engineering, and medical research will find this book an essential guide to the principles affecting research data in the digital age. ER - TY - BOOK AU - Institute of Medicine TI - How Should the Recommended Dietary Allowances be Revised? DO - 10.17226/9194 PY - 1994 UR - https://nap.nationalacademies.org/catalog/9194/how-should-the-recommended-dietary-allowances-be-revised PB - The National Academies Press CY - Washington, DC LA - English KW - Food and Nutrition ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Thomas Arrison A2 - Jennifer Saunders A2 - Emi Kameyama TI - Developing a Toolkit for Fostering Open Science Practices: Proceedings of a Workshop SN - DO - 10.17226/26308 PY - 2021 UR - https://nap.nationalacademies.org/catalog/26308/developing-a-toolkit-for-fostering-open-science-practices-proceedings-of PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology AB - The National Academies Roundtable on Aligning Incentives for Open Science, established in 2019, has taken on an important role in addressing issues with open science. The roundtable convenes critical stakeholders to discuss the effectiveness of current incentives for adopting open science practices, current barriers of all types, and ways to move forward in order to align reward structures and institutional values. The Roundtable convened a virtual public workshop on fostering open science practices on November 5, 2020. The broad goal of the workshop was to identify paths to growing the nascent coalition of stakeholders committed to reenvisioning credit/reward systems (e.g., academic hiring, tenure and promotion, and grants)to fully incentivize open science practices. The workshop explored the information and resource needs of researchers, research institutions, government agencies, philanthropies, professional societies, and other stakeholders interested in further supporting and implementing open science practices. This publication summarizes the presentations and discussion of the workshop. ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Kyle Cavagnini A2 - Carolyn Shore A2 - Megan Snair TI - Enhancing Public Access to the Results of Research Supported by the Department of Health and Human Services: Proceedings of a Workshop–in Brief DO - 10.17226/27480 PY - 2024 UR - https://nap.nationalacademies.org/catalog/27480/enhancing-public-access-to-the-results-of-research-supported-by-the-department-of-health-and-human-services PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine AB - The National Academies hosted a hybrid public workshop in Fall 2023, in Fall 2023, sponsored by the National Institutes of Health, to explore approaches that U.S. Department of Health and Human Services (HHS) agencies could consider as they develop or update policies to enhance public access to the results of HHS-funded research. Workshop participants discussed how policy changes would promote equity in publication opportunities for investigators, provide ways to improve accessibility to publications by diverse communities of users, and increase findability and transparency of research results. ER - TY - BOOK AU - National Research Council A2 - Robert Pool A2 - Kim Waddell TI - Exploring Horizons for Domestic Animal Genomics: Workshop Summary SN - DO - 10.17226/10487 PY - 2002 UR - https://nap.nationalacademies.org/catalog/10487/exploring-horizons-for-domestic-animal-genomics-workshop-summary PB - The National Academies Press CY - Washington, DC LA - English KW - Biology and Life Sciences AB - Recognizing the important contributions that genomic analysis can make to agriculture, production and companion animal science, evolutionary biology, and human health with respect to the creation of models for genetic disorders, the National Academies convened a group of individuals to plan a public workshop that would: (1) assess these contributions; (2) identify potential research directions for existing genomics programs; and (3) highlight the opportunities of a coordinated, multi-species genomics effort for the science and policymaking communities. Their efforts culminated in a workshop sponsored by the U.S. Department of Agriculture, Department of Energy, National Science Foundation, and the National Institutes of Health. The workshop was convened on February 19, 2002. The goal of the workshop was to focus on domestic animal genomics and its integration with other genomics and functional genomics projects. ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine TI - Open Science by Design: Realizing a Vision for 21st Century Research SN - DO - 10.17226/25116 PY - 2018 UR - https://nap.nationalacademies.org/catalog/25116/open-science-by-design-realizing-a-vision-for-21st-century PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology AB - Openness and sharing of information are fundamental to the progress of science and to the effective functioning of the research enterprise. The advent of scientific journals in the 17th century helped power the Scientific Revolution by allowing researchers to communicate across time and space, using the technologies of that era to generate reliable knowledge more quickly and efficiently. Harnessing today's stunning, ongoing advances in information technologies, the global research enterprise and its stakeholders are moving toward a new open science ecosystem. Open science aims to ensure the free availability and usability of scholarly publications, the data that result from scholarly research, and the methodologies, including code or algorithms, that were used to generate those data. Open Science by Design is aimed at overcoming barriers and moving toward open science as the default approach across the research enterprise. This report explores specific examples of open science and discusses a range of challenges, focusing on stakeholder perspectives. It is meant to provide guidance to the research enterprise and its stakeholders as they build strategies for achieving open science and take the next steps. ER - TY - BOOK AU - National Research Council TI - A Strategy for Research in Space Biology and Medicine in the New Century SN - DO - 10.17226/6282 PY - 1998 UR - https://nap.nationalacademies.org/catalog/6282/a-strategy-for-research-in-space-biology-and-medicine-in-the-new-century PB - The National Academies Press CY - Washington, DC LA - English KW - Space and Aeronautics AB - Construction of the international space station, scheduled to start in late 1998, ushers in a new era for laboratory sciences in space. This is especially true for space life sciences, which include not only the use of low gravity as an experimental parameter to study fundamental biological processes but also the study of the serious physiological changes that occur in astronauts as they remain in space for increasingly longer missions. This book addresses both of these aspects and provides a comprehensive review of ground-based and space research in eleven disciplines, ranging from bone physiology to plant biology. It also offers detailed, prioritized recommendations for research during the next decade, which are expected to have a considerable impact on the direction of NASA's research program. The volume is also a valuable reference tool for space and life scientists. ER - TY - BOOK AU - National Academy of Engineering A2 - Steve Olson TI - The Importance of Engineering Talent to the Prosperity and Security of the Nation: Summary of a Forum SN - DO - 10.17226/18626 PY - 2014 UR - https://nap.nationalacademies.org/catalog/18626/the-importance-of-engineering-talent-to-the-prosperity-and-security-of-the-nation PB - The National Academies Press CY - Washington, DC LA - English KW - Engineering and Technology AB - The quality of engineering in the United States will only be as good as the quality of the engineers doing it. The recruitment and retention of talented young people into engineering therefore need to be top national priorities, given the crucial importance of engineering to our prosperity, security, health, and well-being. Only 4.4 percent of the undergraduate degrees awarded by US colleges and universities are in engineering, compared with 13 percent in key European countries (the United Kingdom, Sweden, Finland, Denmark, Germany, and France) and 23 percent in key Asian countries (India, Japan, China, Taiwan, South Korea, and Singapore). In the past, the United States has been able to attract engineering graduate students and professionals from other countries to meet the need for engineering talent in the public and private sectors. But other countries are providing increasingly attractive opportunities for engineers, with excellent salaries, facilities, and economic growth potential. The United States can no longer assume that the best engineering talent in the world will want to come to this country. The Importance of Engineering Talent to the Prosperity and Security of the Nation is the summary of a forum held during the National Academy of Engineering's 2013 Annual Meeting. Speakers discussed the opportunities and challenges of creation and wise use of engineering talent, and made recommendations for recruitment and retention strategies. This report assesses the status of engineering education in the U.S. and makes recommendations to promote and improve engineering education. ER - TY - BOOK AU - National Research Council TI - Issues for Science and Engineering Researchers in the Digital Age SN - DO - 10.17226/10100 PY - 2001 UR - https://nap.nationalacademies.org/catalog/10100/issues-for-science-and-engineering-researchers-in-the-digital-age PB - The National Academies Press CY - Washington, DC LA - English KW - Behavioral and Social Sciences KW - Education ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Evelyn Tomaszewski TI - Identifying the Role of Violence and Its Prevention in the Post-2015 Global Agenda: Proceedings of a Workshop—in Brief DO - 10.17226/25076 PY - 2018 UR - https://nap.nationalacademies.org/catalog/25076/identifying-the-role-of-violence-and-its-prevention-in-the-post-2015-global-agenda PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine KW - Behavioral and Social Sciences AB - To illuminate the role of violence and its prevention in the post-2015 global agenda, the National Academies of Sciences, Engineering and Medicine’s Forum on Global Violence Prevention convened a 2-day meeting to explore the ways in which violence prevention efforts fit into the global agenda and to begin to identify the ways in which the U.S. government as well as state governments, industries, multilaterals, nongovernmental organizations, and other institutions might be able to support and advance both the sustainable development agenda and the violence prevention objectives within it. This publication summarizes the presentations and discussions from the meeting. ER - TY - BOOK AU - Institute of Medicine A2 - Steve Olson A2 - Anne B. Claiborne TI - Accelerating the Development of New Drugs and Diagnostics: Maximizing the Impact of the Cures Acceleration Network: Workshop Summary SN - DO - 10.17226/13452 PY - 2012 UR - https://nap.nationalacademies.org/catalog/13452/accelerating-the-development-of-new-drugs-and-diagnostics-maximizing-the PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine AB - Advances in technologies and knowledge are creating new avenues for research and opportunities for the discovery and clinical development of innovative therapies and diagnostics. However, despite these opportunities, only a small fraction of investigational products are successfully developed into cures and therapies that can be accessed by patients. One response to the ever-widening gap between the number and promise of basic scientific discoveries and the translation of those discoveries into therapies is a renewed emphasis on collaborative approaches among federal agencies, academia, and industry, all directed at the advancement of the drug development enterprise. The newly developed Cures Acceleration Network (CAN)-a part of the National Center for Advancing Translational Sciences (NCATS) within the National Institutes of Health (NIH)-has the potential to catalyze widespread changes in NCATS, NIH, and the drug development ecosystem in general. On June 4-5, 2012, the IOM Forum on Drug Discovery, Development, and Translation held, at the request of NCATS, a workshop-bringing together members of federal government agencies, the private sector, academia, and advocacy groups-to explore options and opportunities in the implementation of CAN. Accelerating the Development of New Drugs and Diagnostics: Maximizing the Impact of the Cures Acceleration Network: Workshop Summary summarizes the workshop. ER - TY - BOOK AU - National Academies of Sciences, Engineering, and Medicine A2 - Alina Baciu A2 - Kathleen Stratton TI - Protecting the Health and Well-Being of Communities in a Changing Climate: Proceedings of a Workshop—in Brief DO - 10.17226/24797 PY - 2017 UR - https://nap.nationalacademies.org/catalog/24797/protecting-the-health-and-well-being-of-communities-in-a-changing-climate PB - The National Academies Press CY - Washington, DC LA - English KW - Health and Medicine KW - Environment and Environmental Studies AB - On March 13, 2017, the Roundtable on Environmental Health Sciences, Research, and Medicine and the Roundtable on Population Health Improvement held a 1-day public workshop at the National Academy of Sciences building in Washington, DC. Participants discussed regional, state, and local efforts to mitigate and adapt to health challenges arising from climate change, ranging from heat to rising water. This publication summarizes the presentations and discussions from the workshop. ER - TY - BOOK AU - National Research Council TI - Sharing Publication-Related Data and Materials: Responsibilities of Authorship in the Life Sciences SN - DO - 10.17226/10613 PY - 2003 UR - https://nap.nationalacademies.org/catalog/10613/sharing-publication-related-data-and-materials-responsibilities-of-authorship-in PB - The National Academies Press CY - Washington, DC LA - English KW - Policy for Science and Technology KW - Health and Medicine AB - Biologists communicate to the research community and document their scientific accomplishments by publishing in scholarly journals. This report explores the responsibilities of authors to share data, software, and materials related to their publications. In addition to describing the principles that support community standards for sharing different kinds of data and materials, the report makes recommendations for ways to facilitate sharing in the future. ER -