Download Free Building Data Capacity For Patient Centered Outcomes Research Book in PDF and EPUB Free Download. You can read online Building Data Capacity For Patient Centered Outcomes Research and write the review.

"The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee's work will contribute to ASPE's development of a strategic plan that will guide their work related to PCOR data capacity over the next decade. As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the second in a series of three interim reports, summarizes the discussion and committee conclusions from the second workshop, focused on data standards, methods, and policies that could make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas."--
The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. Building Data Capacity for Patient-Centered Outcomes Research contains findings and conclusions in the areas that could benefit from being prioritized as part of ASPE's work, and offers input on strengthening the overall framework for building the data infrastructure over the coming years. The committee authoring this report also issued three interim reports, which summarized discussions from three workshops, and are included as appendices in the final report.
This report from the second Strategic Highway Research Program (SHRP 2), which is administered by the Transportation Research Board of the National Academies, sets out requirements for travel time reliability within a performance-based planning process. The research includes an effort to determine the economic value of improvements in travel time reliability by applying options theory from the financial sector. The report includes two succinct tables that describe requirements for person and freight trips for reliable transport, as well as a forecast of the year 2030 under alternative assumptions that may influence travel time reliability.
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.
Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.
In 2016, the National Academy of Medicine (NAM) hosted a series of meetings, which was sponsored by the Patient-Centered Outcomes Research Institute, with support from NAM's Executive Leadership Network. The series underscored the importance of partnerships between researchers and health system leadership and considered opportunities to build institutional capacity, cross-institutional synergy, and system-wide learning. During these meetings, health system executives, researchers, and others discussed building infrastructure that simultaneously facilitates care delivery, care improvement and evidence development. The vision is a digital system-wide progress toward continuous and seamless learning and improvement throughout health and health care. This publication aims to answer the following questions: How can evidence development be accelerated, given current knowledge and resources? What might that mean for better outcomes for patients and greater efficiency in health care? What system and culture changes are required to generate evidence from the care experience? How much progress has been made in preparing the field for the paradigm shift? What are the hallmarks of successful partnerships among care executives and research leaders? What are the priorities in advancing executive leadership to the next level for continuously learning health and health care?
Telemedicine and telehealth have consistently been shown to be effective for remote areas or limited-resource locations, regular medical and surgical practice, primary care, second opinion, extreme conditions, major crises, and disaster management. The aim of this book is to bring all aspects of telemedicine and e-health to the reader, in a simple, make-sense approach, in one tome. The book is structured in four parts with 29 chapters written by the best experts in the field from around the world, including clinicians, scientists, and administrators of telemedicine programs. Part I deals with basic principles of telemedicine and telepresence. Historical journeys of telemedicine and strategies, building sustainable telemedicine and telehealth programs in the United States and in the Balkans, as well as incorporation of telemedicine in the current ongoing pandemic COVID-19 are well described and are must read. Current technological developments, rules and regulations, legal and business aspects and consent are also addressed. Part II describes strategies for building sustainable telemedicine and telehealth programs. Telehealth patient portals and public-private partnership modes of technology, as well the role of international telemedicine and how to make it work, are valuable chapters of great significance. Part III describes outcomes-based evidence clinical applications of telemedicine in trauma, burns, intensive care, pediatric care, psychiatry, and stroke. Finally, one important chapter for the readers is the telemedicine for prison and jail population. The final part, Part IV depicts surgical telementoring and teleproctoring, a chapter written by 18 various surgical experts, a true gem for the readers. The book ends with promises and hurdles of telemedicine in austere conditions. Telemedicine, Telehealth and Telepresence serves as a valuable resource that focuses on providing patients care from a distance using store and forward technology to live actual performance of operations at a distance.Chapters 1, 6, 12 and 17 are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.