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Clinical research informatics

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https://www.readbyqxmd.com/read/28633483/an-informatics-research-agenda-to-support-patient-and-family-empowerment-and-engagement-in-care-and-recovery-during-and-after-hospitalization
#1
Sarah Collins, Patricia Dykes, David W Bates, Brittany Couture, Ronen Rozenblum, Jennifer Prey, Kristin O'Reilly, Patricia Q Bourie, Cindy Dwyer, S Ryan Greysen, Jeffery Smith, Michael Gropper, Anuj K Dalal
As part of an interdisciplinary acute care patient portal task force with members from 10 academic medical centers and professional organizations, we held a national workshop with 71 attendees representing over 30 health systems, professional organizations, and technology companies. Our consensus approach identified 7 key sociotechnical and evaluation research focus areas related to the consumption and capture of information from patients, care partners (eg, family, friends), and clinicians through portals in the acute and post-acute care settings...
June 17, 2017: Journal of the American Medical Informatics Association: JAMIA
https://www.readbyqxmd.com/read/28623185/a-web-based-data-collection-platform-for-multisite-randomized-behavioral-intervention-trials-development-key-software-features-and-results-of-a-user-survey
#2
Riddhi A Modi, Michael J Mugavero, Rivet K Amico, Jeanne Keruly, Evelyn Byrd Quinlivan, Heidi M Crane, Alfredo Guzman, Anne Zinski, Solange Montue, Katya Roytburd, Anna Church, James H Willig
BACKGROUND: Meticulous tracking of study data must begin early in the study recruitment phase and must account for regulatory compliance, minimize missing data, and provide high information integrity and/or reduction of errors. In behavioral intervention trials, participants typically complete several study procedures at different time points. Among HIV-infected patients, behavioral interventions can favorably affect health outcomes. In order to empower newly diagnosed HIV positive individuals to learn skills to enhance retention in HIV care, we developed the behavioral health intervention Integrating ENGagement and Adherence Goals upon Entry (iENGAGE) funded by the National Institute of Allergy and Infectious Diseases (NIAID), where we deployed an in-clinic behavioral health intervention in 4 urban HIV outpatient clinics in the United States...
June 16, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/28586416/bridging-the-gap-between-reproducibility-and-translation-data-resources-and-approaches
#3
Caroline J Zeiss, Linda K Johnson
Animal research has constituted a fundamental means to achieve groundbreaking therapies for human disease. However, for complex diseases, promising preclinical results have failed to translate to the clinic. Reasons for this disparity are multifactorial. These include the challenges inherent in modeling complex disease in animals, as well issues of study design, reproducibility and operational norms within the biomedical research enterprise. In this issue, we explore the range of information resources available for the comparative study of disease, as well as challenges to the ultimate translation of preclinical findings...
June 6, 2017: ILAR Journal
https://www.readbyqxmd.com/read/28546849/why-a-registry-of-chronic-urticaria-cur-is-needed
#4
R M Gómez, E Jares, G W Canonica, I Baiardini, G Passalacqua, M Sánchez Borges, A P Kaplan, Carlos E Baena-Cagnani
Chronic urticaria (CU) has a major effect on patients' quality of life. While there have been progressive advances regarding its pathogenesis and treatment, much remains to be done. Registries of other chronic non-communicable diseases have shown many benefits, such as additional basic knowledge and management approaches to diabetes mellitus. Standards of care as well as diagnostic approaches can be elaborated and compared from different sites, using validated instruments. Registries in allergic diseases are also becoming well recognized, and the first registry on CU, accessible from SLaai's webpage, includes parameters for identification, evaluation and management...
2017: World Allergy Organization Journal
https://www.readbyqxmd.com/read/28541552/evidence-appraisal-a-scoping-review-conceptual-framework-and-research-agenda
#5
Andrew Goldstein, Eric Venker, Chunhua Weng
Objective: Critical appraisal of clinical evidence promises to help prevent, detect, and address flaws related to study importance, ethics, validity, applicability, and reporting. These research issues are of growing concern. The purpose of this scoping review is to survey the current literature on evidence appraisal to develop a conceptual framework and an informatics research agenda. Methods: We conducted an iterative literature search of Medline for discussion or research on the critical appraisal of clinical evidence...
May 24, 2017: Journal of the American Medical Informatics Association: JAMIA
https://www.readbyqxmd.com/read/28535206/clinical-exome-sequencing-reports-current-informatics-practice-and-future-opportunities
#6
Rajeswari Swaminathan, Yungui Huang, Caroline Astbury, Sara Fitzgerald-Butt, Katherine Miller, Justin Cole, Christopher Bartlett, Simon Lin
The increased adoption of clinical whole exome sequencing (WES) has improved the diagnostic yield for patients with complex genetic conditions. However, the informatics practice for handling information contained in whole exome reports is still in its infancy, as evidenced by the lack of a common vocabulary within clinical sequencing reports generated across genetic laboratories. Genetic testing results are mostly transmitted using portable document format, which can make secondary analysis and data extraction challenging...
May 23, 2017: Journal of the American Medical Informatics Association: JAMIA
https://www.readbyqxmd.com/read/28523205/2016-year-in-review-of-clinical-and-consumer-informatics-analysis-and-visualization-of-keywords-and-topics
#7
REVIEW
Hyeoun-Ae Park, Joo Yun Lee, Jeongah On, Ji Hyun Lee, Hyesil Jung, Seul Ki Park
OBJECTIVES: The objective of this study was to review and visualize the medical informatics field over the previous 12 months according to the frequencies of keywords and topics in papers published in the top four journals in the field and in Healthcare Informatics Research (HIR), an official journal of the Korean Society of Medical Informatics. METHODS: A six-person team conducted an extensive review of the literature on clinical and consumer informatics. The literature was searched using keywords employed in the American Medical Informatics Association year-in-review process and organized into 14 topics used in that process...
April 2017: Healthcare Informatics Research
https://www.readbyqxmd.com/read/28508782/the-use-of-restful-web-services-in-medical-informatics-and-clinical-research-and-its-implementation-in-europe
#8
Jozef Aerts
BACKGROUND: RESTful web services nowadays are state-of-the-art in business transactions over the internet. They are however not very much used in medical informatics and in clinical research, especially not in Europe. OBJECTIVES: To make an inventory of RESTful web services that can be used in medical informatics and clinical research, including those that can help in patient empowerment in the DACH region and in Europe, and to develop some new RESTful web services for use in clinical research and regulatory review...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28495345/the-georges-pompidou-university-hospital-clinical-data-warehouse-a-8-years-follow-up-experience
#9
Anne-Sophie Jannot, Eric Zapletal, Paul Avillach, Marie-France Mamzer, Anita Burgun, Patrice Degoulet
BACKGROUND: When developed jointly with clinical information systems, clinical data warehouses (CDWs) facilitate the reuse of healthcare data and leverage clinical research. OBJECTIVE: To describe both data access and use for clinical research, epidemiology and health service research of the "Hôpital Européen Georges Pompidou" (HEGP) CDW. METHODS: The CDW has been developed since 2008 using an i2b2 platform. It was made available to health professionals and researchers in October 2010...
June 2017: International Journal of Medical Informatics
https://www.readbyqxmd.com/read/28494382/a-computer-supported-management-of-photographic-documentation-in-plastic-surgery-system-development-and-its-clinical-application
#10
Karol Korczak, Anna Kasielska-Trojan, Marian Niedźwiedziński, Bogusław Antoszewski
Photographic documentation is very important for plastic, reconstructive, and especially aesthetic surgery procedures. It can be used to improve patient care as well as to carry out scientific research. The results of our previous studies confirmed a strong demand for Information Technology (IT) systems dedicated to plastic surgery. Unfortunately, most of the solutions of this type are not suited to the actual needs. For this reason we decided to develop a reliable system for photographic documentation storage...
July 1, 2017: Computers in Biology and Medicine
https://www.readbyqxmd.com/read/28480479/historical-roots-of-international-biomedical-and-health-informatics-the-road-to-ifip-tc4-and-imia-through-cybernetic-medicine-and-the-elsinore-meetings
#11
C A Kulikowski
BACKGROUND: It is 50 years since the International Federation of Information Processing (IFIP) Societies approved the formation of a new Technical Committee (TC) 4 on Medical Information Processing under the leadership of Professor Francois Grémy, which was the direct precursor of the International Medical Informatics Association (IMIA). OBJECTIVES: The goals of this paper are to give a very brief overview of early international developments leading to informatics in medicine, with the origins of the applications of computers to medicine in the USA and Europe, and two meetings - of the International Society of Cybernetic Medicine, and the Elsinore Meetings on Hospital Information Systems - that took place in 1966...
May 8, 2017: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/28480474/secondary-use-and-analysis-of-big-data-collected-for-patient-care-contribution-from-the-imia-working-group-on-data-mining-and-big-data-analytics
#12
F J Martin-Sanchez, V Aguiar-Pulido, G H Lopez-Campos, N Peek, L Sacchi
OBJECTIVES: To identify common methodological challenges and review relevant initiatives related to the re-use of patient data collected in routine clinical care, as well as to analyze the economic benefits derived from the secondary use of this data. Through the use of several examples, this article aims to provide a glimpse into the different areas of application, namely clinical research, genomic research, study of environmental factors, and population and health services research...
May 8, 2017: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/28480472/added-value-from-secondary-use-of-person-generated-health-data-in-consumer-health-informatics-contribution-of-the-consumer-health-informatics-imia-working-group
#13
P-Y Hsueh, Y-K Cheung, S Dey, K K Kim, F J Martin-Sanchez, S K Petersen, T Wetter
INTRODUCTION: Various health-related data, subsequently called Person Generated Health Data (PGHD), is being collected by patients or presumably healthy individuals as well as about them as much as they become available as measurable properties in their work, home, and other environments. Despite that such data was originally just collected and used for dedicated predefined purposes, more recently it is regarded as untapped resources that call for secondary use. METHOD: Since the secondary use of PGHD is still at its early evolving stage, we have chosen, in this paper, to produce an outline of best practices, as opposed to a systematic review...
May 8, 2017: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/28480470/on-contributing-to-the-progress-of-medical-informatics-as-publisher-congratulations-to-imia-honorary-fellow-dieter-bergemann-on-his-80th-birthday
#14
R Haux, A Geissbuhler, J Holmes, M-C Jaulent, S Koch, C A Kulikowski, C U Lehmann, A T McCray, B Séroussi, L F Soualmia, J H van Bemmel
May 1st, 2017, will mark Dieter Bergemann's 80th birthday. As Chief Executive Officer and Owner of Schattauer Publishers from 1983 to 2016, the biomedical and health informatics community owes him a great debt of gratitude. The past and present editors of Methods of Information in Medicine, the IMIA Yearbook of Medical Informatics, and Applied Clinical Informatics want to honour and thank Dieter Bergemann by providing a brief biography that emphasizes his contributions, by reviewing his critical role as an exceptionally supportive publisher for Schattauer's three biomedical and health informatics periodicals, and by sharing some personal anecdotes...
May 8, 2017: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/28473971/design-and-implementation-of-the-hepatorenal-fibrocystic-disease-core-center-clinical-database-a-centralized-resource-for-characterizing-autosomal-recessive-polycystic-kidney-disease-and-other-hepatorenal-fibrocystic-diseases
#15
Bakri Alzarka, Hiroki Morizono, John W Bollman, Dongkyu Kim, Lisa M Guay-Woodford
Autosomal recessive polycystic kidney disease (ARPKD) and other hepatorenal fibrocystic diseases (HRFD) are relatively rare recessive disorders that constitute an important set of childhood nephropathies. Little is known about fundamental pathogenesis, and advances toward clinical trials will require well-characterized patient cohorts and the development of predictive and prognostic biomarkers. Such studies in rare diseases require greater collaboration than the efforts in common diseases where large patient repositories can be built at a single site...
2017: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/28472359/constructing-the-informatics-and-information-technology-foundations-of-a-medical-device-evaluation-system-a-report-from-the-fda-unique-device-identifier-demonstration
#16
Joseph P Drozda, James Roach, Thomas Forsyth, Paul Helmering, Benjamin Dummitt, James E Tcheng
Objective: The US Food and Drug Administration (FDA) has recognized the need to improve the tracking of medical device safety and performance, with implementation of Unique Device Identifiers (UDIs) in electronic health information as a key strategy. The FDA funded a demonstration by Mercy Health wherein prototype UDIs were incorporated into its electronic information systems. This report describes the demonstration's informatics architecture. Methods: Prototype UDIs for coronary stents were created and implemented across a series of information systems, resulting in UDI-associated data flow from manufacture through point of use to long-term follow-up, with barcode scanning linking clinical data with UDI-associated device attributes...
May 3, 2017: Journal of the American Medical Informatics Association: JAMIA
https://www.readbyqxmd.com/read/28448200/better-together-the-making-and-maturation-of-the-palliative-care-research-cooperative-group
#17
Christine L Ritchie, Kathryn I Pollak, Karen A Kehl, Jeri L Miller, Jean S Kutner
OBJECTIVE: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). BACKGROUND: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. METHODS: The PCRC supports investigators in the conduct of multisite clinical studies...
June 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28410247/ce-original-research-creating-an-evidence-based-progression-for-clinical-advancement-programs
#18
Kathleen G Burke, Tonya Johnson, Christine Sites, Jane Barnsteiner
: Background: The Institute of Medicine (IOM) and the Quality and Safety Education for Nurses (QSEN) project have identified six nursing competencies and supported their integration into undergraduate and graduate nursing curricula nationwide. But integration of those competencies into clinical practice has been limited, and evidence for the progression of competency proficiency within clinical advancement programs is scant. Using an evidence-based approach and building on the competencies identified by the IOM and QSEN, a team of experts at an academic health system developed eight competency domains and 186 related knowledge, skills, and attitudes (KSAs) for professional nursing practice...
May 2017: American Journal of Nursing
https://www.readbyqxmd.com/read/28366166/a-path-to-precision-in-the-icu
#19
REVIEW
David M Maslove, Francois Lamontagne, John C Marshall, Daren K Heyland
Precision medicine is increasingly touted as a groundbreaking new paradigm in biomedicine. In the ICU, the complexity and ambiguity of critical illness syndromes have been identified as fundamental justifications for the adoption of a precision approach to research and practice. Inherently protean diseases states such as sepsis and acute respiratory distress syndrome have manifestations that are physiologically and anatomically diffuse, and that fluctuate over short periods of time. This leads to considerable heterogeneity among patients, and conditions in which a "one size fits all" approach to therapy can lead to widely divergent results...
April 3, 2017: Critical Care: the Official Journal of the Critical Care Forum
https://www.readbyqxmd.com/read/28352925/implementation-of-a-single-sign-on-system-between-practice-research-and-learning-systems
#20
Saptarshi Purkayastha, Judy W Gichoya, Siva Abhishek Addepally
BACKGROUND: Multiple specialized electronic medical systems are utilized in the health enterprise. Each of these systems has their own user management, authentication and authorization process, which makes it a complex web for navigation and use without a coherent process workflow. Users often have to remember multiple passwords, login/logout between systems that disrupt their clinical workflow. Challenges exist in managing permissions for various cadres of health care providers. OBJECTIVES: This case report describes our experience of implementing a single sign-on system, used between an electronic medical records system and a learning management system at a large academic institution with an informatics department responsible for student education and a medical school affiliated with a hospital system caring for patients and conducting research...
March 29, 2017: Applied Clinical Informatics
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