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Building Data Capacity For Patient Centered Outcomes Research
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Book Synopsis Building Data Capacity for Patient-Centered Outcomes Research by :
Download or read book Building Data Capacity for Patient-Centered Outcomes Research written by and published by . This book was released on 2022 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: "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."--
Author :National Academies of Sciences, Engineering, and Medicine Publisher : ISBN 13 :9780309287111 Total Pages :0 pages Book Rating :4.2/5 (871 download)
Book Synopsis Building Data Capacity for Patient-Centered Outcomes Research by : National Academies of Sciences, Engineering, and Medicine
Download or read book Building Data Capacity for Patient-Centered Outcomes Research written by National Academies of Sciences, Engineering, and Medicine and published by . This book was released on 2022 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Author :National Academies of Sciences, Engineering, and Medicine (U.S.) Publisher :Transportation Research Board ISBN 13 :0309273706 Total Pages :378 pages Book Rating :4.3/5 (92 download)
Book Synopsis Evaluating Alternative Operations Strategies to Improve Travel Time Reliability by : National Academies of Sciences, Engineering, and Medicine (U.S.)
Download or read book Evaluating Alternative Operations Strategies to Improve Travel Time Reliability written by National Academies of Sciences, Engineering, and Medicine (U.S.) and published by Transportation Research Board. This book was released on 2022-03-29 with total page 378 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Author :Agency for Healthcare Research and Quality/AHRQ Publisher :Government Printing Office ISBN 13 :1587634333 Total Pages :385 pages Book Rating :4.5/5 (876 download)
Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ
Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Sharing Clinical Research Data by : Institute of Medicine
Download or read book Sharing Clinical Research Data written by Institute of Medicine and published by National Academies Press. This book was released on 2013-06-07 with total page 157 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis The Patient - Patient-Centered Outcomes Research by :
Download or read book The Patient - Patient-Centered Outcomes Research written by and published by . This book was released on with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Digital Infrastructure for the Learning Health System by : Institute of Medicine
Download or read book Digital Infrastructure for the Learning Health System written by Institute of Medicine and published by National Academies Press. This book was released on 2011-10-21 with total page 336 pages. Available in PDF, EPUB and Kindle. Book excerpt: Like many other industries, health care is increasingly turning to digital information and the use of electronic resources. The Institute of Medicine's Roundtable on Value & Science-Driven Health Care hosted three workshops to explore current efforts and opportunities to accelerate progress in improving health and health care with information technology systems.
Book Synopsis Accelerating Medical Evidence Generation and Use by : National Academy of Medicine
Download or read book Accelerating Medical Evidence Generation and Use written by National Academy of Medicine and published by . This book was released on 2023-09-09 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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?
Book Synopsis Telemedicine, Telehealth and Telepresence by : Rifat Latifi
Download or read book Telemedicine, Telehealth and Telepresence written by Rifat Latifi and published by Springer Nature. This book was released on 2020-11-24 with total page 493 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Outcome Measure Harmonization and Data Infrastructure for Patient-centered Outcomes Research in Depression by : Haley S. Friedler
Download or read book Outcome Measure Harmonization and Data Infrastructure for Patient-centered Outcomes Research in Depression written by Haley S. Friedler and published by . This book was released on 2021 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Accelerating Medical Evidence Generation and Use by : Joe Selby
Download or read book Accelerating Medical Evidence Generation and Use written by Joe Selby and published by . This book was released on 2017 with total page 100 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Collaboration Between Health Care and Public Health by : Institute of Medicine
Download or read book Collaboration Between Health Care and Public Health written by Institute of Medicine and published by National Academies Press. This book was released on 2016-02-04 with total page 105 pages. Available in PDF, EPUB and Kindle. Book excerpt: On February 5, 2015, the Institute of Medicine Roundtable on Population Health Improvement hosted a workshop to explore the relationship between public health and health care, including opportunities, challenges, and practical lessons. The workshop was convened in partnership with the Association of State and Territorial Health Officials (ASTHO)-Supported Primary Care and Public Health Collaborative. Organized in response to the 2012 IOM report Primary Care and Public Health: Exploring Integration to Improve Population Health, this workshop focused on current issues at the interface of public health and health care, including opportunities presented by and lessons learned from the Centers for Medicaid and Medicare Services State Innovation Models program. The workshop featured presentations on several dimensions of the public health-health care relationship. Collaboration Between Health Care and Public Health summarizes the presentations and discussion of the event.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309455650 Total Pages :103 pages Book Rating :4.3/5 (94 download)
Book Synopsis Real-World Evidence Generation and Evaluation of Therapeutics by : National Academies of Sciences, Engineering, and Medicine
Download or read book Real-World Evidence Generation and Evaluation of Therapeutics written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-07-05 with total page 103 pages. Available in PDF, EPUB and Kindle. Book excerpt: The volume and complexity of information about individual patients is greatly increasing with use of electronic records and personal devices. Potential effects on medical product development in the context of this wealth of real-world data could be numerous and varied, ranging from the ability to determine both large-scale and patient-specific effects of treatments to the ability to assess how therapeutics affect patients' lives through measurement of lifestyle changes. In October 2016, the National Academies of Sciences, Engineering, and Medicine held a workshop to facilitate dialogue among stakeholders about the opportunities and challenges for incorporating real-world evidence into all stages in the process for the generation and evaluation of therapeutics. Participants explored unmet stakeholder needs and opportunities to generate new kinds of evidence that meet those needs. This publication summarizes the presentations and discussions from the workshop.
Book Synopsis National Patient-Centered Clinical Research Network (PCORnet) Phase I by : Justin William Timbie
Download or read book National Patient-Centered Clinical Research Network (PCORnet) Phase I written by Justin William Timbie and published by . This book was released on 2015 with total page 164 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit, nongovernmental organization authorized under the Affordable Care Act of 2010 to help close gaps in research evidence that are needed to optimize patient and clinician decisionmaking and improve health outcomes. To enhance the nation’s capacity to conduct comparative effectiveness research, PCORI has invested more than $100 million in the development of PCORnet, the National Patient-Centered Clinical Research Network. The centerpiece of the PCORnet initiative is a distributed research network that combines clinical data from electronic health records and data contributed directly by patients from participating networks located throughout the United States. A distributed network allows a spectrum of analyses to be conducted without the physical pooling of data, which remain behind the protection of each institution’s firewalls. Eventually, even researchers not affiliated with PCORnet may be able to use its network to conduct research with the broad participation of patients, clinicians, and health systems. Phase I of PCORnet’s development was dedicated to building its governance, technical, and research infrastructure. This report describes the findings of a formative evaluation of PCORnet’s Phase I activities and addresses PCORnet’s readiness to achieve Phase II objectives. PCORnet made substantial progress during its initial phase of development and operations. However, many challenges remain. The degree to which PCORnet can scale up quickly in Phase II by expanding the common data model and launching studies that are supported by high-quality data and present a compelling use cases to potential funders will determine the network’s future success.
Author :United States Government Accountability Office Publisher :Createspace Independent Publishing Platform ISBN 13 :9781982002879 Total Pages :38 pages Book Rating :4.0/5 (28 download)
Book Synopsis Comparative Effectiveness by : United States Government Accountability Office
Download or read book Comparative Effectiveness written by United States Government Accountability Office and published by Createspace Independent Publishing Platform. This book was released on 2017-12-24 with total page 38 pages. Available in PDF, EPUB and Kindle. Book excerpt: Comparative Effectiveness: Initial Assessment of the Patient-Centered Outcomes Research Institute
Book Synopsis Developing Methods to Link Patient Records Across Data Sets that Preserve Patient Privacy by : Kevin Haynes
Download or read book Developing Methods to Link Patient Records Across Data Sets that Preserve Patient Privacy written by Kevin Haynes and published by . This book was released on 2020 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: BACKGROUND: Patient-centered outcomes research (PCOR) relies on access to researchable health care data for a broad spectrum of patients. Payer-stakeholders, such as Anthem, can use longitudinal patient-level claims data from their general membership to identify patients for engagement in PCOR opportunities. We hypothesized that the contributions of payer-stakeholder member engagement to PCOR initiatives could expand patient-centered registry participation as evaluated through linkage with health plan data. To design and test a model for improving PCOR engagement and data integration between patient-centered registry self-reported data and health plan administrative claims data, we developed privacy-preserving record linkage (PPRL) methods to determine overlapping membership in the National Patient-Centered Clinical Research Network (PCORnet), patient-powered research networks (PPRNs), and a health plan research network (HPRN). We queried the resulting overlapping data to identify and validate claims-based computable phenotypes and tested different outreach approaches to engage health plan members in patient-centered registry participation. Our research advanced the methodology standards for data linkage within a distributed research network (DRN) as well as the PCORI methodology domains Describe data linkage plans and Requirements for the design and features of data networks. We developed methods that improved the capacity of DRNs by ensuring the appropriate privacy and confidentiality of network participants. In addition, we engaged a payer-stakeholder data repository, the HealthCore Integrated Research Environment, to conduct population-based patient identification of potential research participants. OBJECTIVE: This research aimed to develop and test linkage and validation methods to identify potential participants for PCOR opportunities. We assessed the feasibility of linking and using PPRN membership and health plan data to confirm self-reported diagnosis (aim 1) and to contact health plan members to participate in patient-centered registries (aim 2). Objectives in aim 1 were to test PPRL processes between PPRN members' and health plan enrollees' data and to measure disease-specific confirmation rates, a validation measure of health plan administrative data on patient-reported disease status, as indicated based on participation in a disease-specific patient-centered registry, for particular health conditions. Aim 2 sought to quantify health plan members' registration rates in any of 4 disease-specific PPRNs following 2 common payer-initiated outreach methods for inviting member participation: mail and email. We also conducted structured interviews with PPRN representatives to gauge their interest in health plan member outreach and to assess patient understanding of the need for data linkage with health plans to close gaps in evidence for the PPRN disease conditions of interest. METHODS: Aim 1 developed PPRL methods for the anonymous linkage of overlapping members using secure HIPAA-compliant, 1-way, cryptographic hash functions. A cryptographic hash function is a mathematical algorithm that converts a string of text into an irreversible hash text string. For the linked data from the 4 PPRNs--the American BRCA Outcomes and Utilization of Testing PPRN, Arthritis Patient Partnership With Comparative Effectiveness Researchers, Multiple Sclerosis (MS) PPRN, and Vasculitis PPRN--we compared self-reported diagnoses by PPRN members with claims-based computable phenotypes to validate agreement between the 2 data sources on the knowledge of disease status. Aim 2 identified enrolled members who met the diagnostic criteria for computable phenotypes but were not registered in a PPRN. We then randomly assigned members to 2 groups (outreach by mail or email) and quantified new PPRN registrants by employing PPRL methods. In a separate study, we conducted structured interviews with representatives of PPRNs to understand their interest in and willingness to participate in relevant research sponsored by health plans. RESULTS: AIM 1: Data identifiers for 21 616 PPRN members were converted through PPRL into hashed identifiers, and 4487 (21%) were linked to health plan data. Of the linked cohort, 3548 (16%) PPRN members were commercially insured, with health plan membership eligible for inclusion in the aim 1 analysis. Irrespective of enrollment duration, confirmation rates (the agreement between patient self-reported disease status as indicated through PPRN membership and health plan administrative record of disease status) were determined. The confirmation rates for breast or ovarian cancer, rheumatoid or psoriatic arthritis or psoriasis, MS, and vasculitis PPRNs were 72%, 50%, 75%, and 67%, respectively, which increased to 91%, 67%, 93%, and 80%, respectively, when limiting the cohort to those with continuous health plan enrollment ≥5 years. AIM 2: A total of 14 571 members were randomly assigned to each outreach method (email or regular mail). Invitations were sent to 13 834 (94.9%) mail group members and 10 205 (70.0%) email group members. A significantly larger proportion of the mail group (n = 78; 0.54%; 95% CI, 0.42%-0.67%) registered in PPRNs relative to the email group (n = 24; 0.16%; 95% CI, 0.11%-0.25%; P
Book Synopsis Initial National Priorities for Comparative Effectiveness Research by : Institute of Medicine
Download or read book Initial National Priorities for Comparative Effectiveness Research written by Institute of Medicine and published by National Academies Press. This book was released on 2009-11-14 with total page 252 pages. Available in PDF, EPUB and Kindle. Book excerpt: Clinical research presents health care providers with information on the natural history and clinical presentations of disease as well as diagnostic and treatment options. In today's healthcare system, patients, physicians, clinicians and family caregivers often lack the sufficient scientific data and evidence they need to determine the best course of treatment for the patients' medical conditions. Initial National Priorities for Comparative Effectiveness Research(CER) is designed to fill this knowledge gap by assisting patients and healthcare providers across diverse settings in making more informed decisions. In this 2009 report, the Institute of Medicine's Committee on Comparative Effectiveness Research Prioritization establishes a working definition of CER, develops a priority list of research topics, and identifies the necessary requirements to support a robust and sustainable CER enterprise. As part of the 2009 American Recovery and Reinvestment Act, Congress appropriated $1.1 billion in federal support of CER, reflecting legislators' belief that better decisions about the use of health care could improve the public's health and reduce the cost of care. The Committee on Comparative Effectiveness Research Prioritization was successful in preparing a list 100 top priority CER topics and 10 recommendations for best practices in the field.
