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Clinical research informatics

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https://www.readbyqxmd.com/read/28921647/pharmacogenomics-implementation-at-the-national-institutes-of-health-clinical-center
#1
Tristan M Sissung, Jon W McKeeby, Jharana Patel, Juan J Lertora, Parag Kumar, Willy A Flegel, Sharon D Adams, Ellen J Eckes, Frank Mickey, Teri M Plona, Stephanie D Mellot, Ryan N Baugher, Xiaolin Wu, Daniel R Soppet, Mary E Barcus, Vivekananda Datta, Kristen M Pike, Gary DiPatrizio, William D Figg, Barry R Goldspiel
The National Institutes of Health Clinical Center (NIH CC) is the largest hospital in the United States devoted entirely to clinical research, with a highly diverse spectrum of patients. Patient safety and clinical quality are major goals of the hospital, and therapy is often complicated by multiple cotherapies and comorbidities. To this end, we implemented a pharmacogenomics program in 2 phases. In the first phase, we implemented genotyping for HLA-A and HLA-B gene variations with clinical decision support (CDS) for abacavir, carbamazepine, and allopurinol...
October 2017: Journal of Clinical Pharmacology
https://www.readbyqxmd.com/read/28918322/time-for-tiger-to-roar-technology-informatics-guiding-education-reform
#2
EDITORIAL
Siobhan O'Connor, Ursula Hubner, Toria Shaw, Rachelle Blake, Marion Ball
Information Technology (IT) continues to evolve and develop with electronic devices and systems becoming integral to healthcare in every country. This has led to an urgent need for all professions working in healthcare to be knowledgeable and skilled in informatics. The Technology Informatics Guiding Education Reform (TIGER) Initiative was established in 2006 in the United States to develop key areas of informatics in nursing. One of these was to integrate informatics competencies into nursing curricula and life-long learning...
August 19, 2017: Nurse Education Today
https://www.readbyqxmd.com/read/28903894/prototype-development-context-driven-dynamic-xml-ophthalmologic-data-capture-application
#3
Peggy Peissig, Kelsey M Schwei, Christopher Kadolph, Joseph Finamore, Efrain Cancel, Catherine A McCarty, Asha Okorie, Kate L Thomas, Jennifer Allen Pacheco, Jyotishman Pathak, Stephen B Ellis, Joshua C Denny, Luke V Rasmussen, Gerard Tromp, Marc S Williams, Tamara R Vrabec, Murray H Brilliant
BACKGROUND: The capture and integration of structured ophthalmologic data into electronic health records (EHRs) has historically been a challenge. However, the importance of this activity for patient care and research is critical. OBJECTIVE: The purpose of this study was to develop a prototype of a context-driven dynamic extensible markup language (XML) ophthalmologic data capture application for research and clinical care that could be easily integrated into an EHR system...
September 13, 2017: JMIR Medical Informatics
https://www.readbyqxmd.com/read/28883198/analysis-of-annotated-data-models-for-improving-data-quality
#4
Hannes Ulrich, Ann-Kristin Kock-Schoppenhauer, Björn Andersen, Josef Ingenerf
The public Medical Data Models (MDM) portal with more than 9.000 annotated forms from clinical trials and other sources provides many research opportunities for the medical informatics community. It is mainly used to address the problem of heterogeneity by searching, mediating, reusing, and assessing data models, e. g. the semi-interactive curation of core data records in a special domain. Furthermore, it can be used as a benchmark for evaluating algorithms that create, transform, annotate, and analyse structured patient data...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28840966/the-diy-digital-medical-centre
#5
James Kenneth Timmis, Kenneth Timmis
Healthcare systems worldwide are confronted with major economic, organizational and logistical challenges. Historic evolution of health care has led to significant healthcare sector fragmentation, resulting in systemic inefficiencies and suboptimal resource exploitation. To attain a sustainable healthcare model, fundamental, system-wide improvements that effectively network, and ensure fulfilment of potential synergies between sectors, and include and facilitate coherent strategic planning and organisation of healthcare infrastructure are needed...
August 25, 2017: Microbial Biotechnology
https://www.readbyqxmd.com/read/28832068/the-emerging-role-of-the-chief-research-informatics-officer-in-academic-health-centers
#6
L Nelson Sanchez-Pinto, Abu S M Mosa, Kate Fultz-Hollis, Umberto Tachinardi, William K Barnett, Peter J Embi
BACKGROUND: The role of the Chief Research Informatics Officer (CRIO) is emerging in academic health centers to address the challenges clinical researchers face in the increasingly digitalized, data-intensive healthcare system. Most current CRIOs are the first officers in their institutions to hold that role. To date there is very little published information about this role and the individuals who serve it. OBJECTIVE: To increase our understanding of the CRIO role, the leaders who serve it, and the factors associated with their success in their organizations...
August 16, 2017: Applied Clinical Informatics
https://www.readbyqxmd.com/read/28815122/incorporating-data-citation-in-a-biomedical-repository-an-implementation-use-case
#7
Snehil Gupta, Connie Zabarovskaya, Brian Romine, Daniel A Vianello, Cynthia Hudson Vitale, Leslie D McIntosh
Research data is a dynamic and evolving entity and the ability to cite such data depends on recreating the same datasets utilized in the original research. Despite the availability of several existing technologies, most data repositories lack the necessary setup to recreate a point-in-time snapshot of data, let alone long-term sustainability of dynamic data without restoring an entire database. Through this project, we adopted a subset of the Research Data Alliance data citation working group recommendations to establish a robust informatics system supporting dynamic data and its use for reproducible research within our evolving clinical data repository...
2017: AMIA Summits on Translational Science Proceedings
https://www.readbyqxmd.com/read/28815111/generalizable-middleware-to-support-use-of-redcap-dynamic-data-pull-for-integrating-clinical-and-research-data
#8
Thomas R Campion, Evan T Sholle, Marcos A Davila
To support integration of clinical and research data, the makers of REDCap, a widely-used electronic data capture system, released the Dynamic Data Pull (DDP) module. Although DDP is a standard module in REDCap, institutions must develop custom middleware web services to exchange data between REDCap and local source systems. The lack of middleware is a barrier to institutional adoption and use by investigators. To overcome this gap, we developed a REDCap DDP web service middleware (accessible at https://github...
2017: AMIA Summits on Translational Science Proceedings
https://www.readbyqxmd.com/read/28815104/electronic-phenotyping-with-aphrodite-and-the-observational-health-sciences-and-informatics-ohdsi-data-network
#9
Juan M Banda, Yoni Halpern, David Sontag, Nigam H Shah
The widespread usage of electronic health records (EHRs) for clinical research has produced multiple electronic phenotyping approaches. Methods for electronic phenotyping range from those needing extensive specialized medical expert supervision to those based on semi-supervised learning techniques. We present Automated PHenotype Routine for Observational Definition, Identification, Training and Evaluation (APHRODITE), an R- package phenotyping framework that combines noisy labeling and anchor learning. APHRODITE makes these cutting-edge phenotyping approaches available for use with the Observational Health Data Sciences and Informatics (OHDSI) data model for standardized and scalable deployment...
2017: AMIA Summits on Translational Science Proceedings
https://www.readbyqxmd.com/read/28797293/health-care-providers-perceptions-of-use-and-influence-of-clinical-decision-support-reminders-qualitative-study-following-a-randomized-trial-to-improve-hpv-vaccination-rates
#10
Brian E Dixon, Monica L Kasting, Shannon Wilson, Amit Kulkarni, Gregory D Zimet, Stephen M Downs
BACKGROUND: Human Papillomavirus (HPV) leads to serious health issues and remains the most common sexually transmitted infection. Despite availability of effective vaccines, HPV vaccination rates are suboptimal. Furthermore, providers recommend the HPV vaccine less than half the time for eligible patients. Prior informatics research has demonstrated the effectiveness of computer-based clinical decision support (CDS) in changing provider behavior, especially in the area of preventative services...
August 10, 2017: BMC Medical Informatics and Decision Making
https://www.readbyqxmd.com/read/28754523/development-and-classification-of-a-robust-inventory-of-near-real-time-outcome-measurements-for-assessing-information-technology-interventions-in-health-care
#11
Tiago K Colicchio, Guilherme Del Fiol, Debra L Scammon, Watson A Bowes, Julio C Facelli, Scott P Narus
OBJECTIVE: To develop and classify an inventory of near real-time outcome measures for assessing information technology (IT) interventions in health care and assess their relevance as perceived by experts in the field. MATERIALS AND METHODS: To verify the robustness and coverage of a previously published inventory of measures and taxonomy, we conducted semi-structured interviews with clinical and administrative leaders from a large care delivery system to collect suggestions of outcome measures that can be calculated with data available in electronic format for near real-time monitoring of EHR implementations...
July 25, 2017: Journal of Biomedical Informatics
https://www.readbyqxmd.com/read/28748430/inicu-integrated-neonatal-care-unit-capturing-neonatal-journey-in-an-intelligent-data-way
#12
Harpreet Singh, Gautam Yadav, Raghuram Mallaiah, Preetha Joshi, Vinay Joshi, Ravneet Kaur, Suneyna Bansal, Samir K Brahmachari
Neonatal period represents first 28 days of life, which is the most vulnerable time for a child's survival especially for the preterm babies. High neonatal mortality is a prominent and persistent problem across the globe. Non-availability of trained staff and infrastructure are the major recognized hurdles in the quality care of these neonates. Hourly progress growth charts and reports are still maintained manually by nurses along with continuous calculation of drug dosage and nutrition as per the changing weight of the baby...
August 2017: Journal of Medical Systems
https://www.readbyqxmd.com/read/28734783/dementia-prevalence-and-incidence-in-a-federation-of-european-electronic-health-record-databases-the-european-medical-informatics-framework-resource
#13
Gayan Perera, Lars Pedersen, David Ansel, Myriam Alexander, H Michael Arrighi, Paul Avillach, Nadia Foskett, Rosa Gini, Mark F Gordon, Usha Gungabissoon, Miguel-Angel Mayer, Gerald Novak, Peter Rijnbeek, Gianluca Trifirò, Johan van der Lei, Pieter J Visser, Robert Stewart
INTRODUCTION: The European Medical Information Framework consortium has assembled electronic health record (EHR) databases for dementia research. We calculated dementia prevalence and incidence in 25 million persons from 2004 to 2012. METHODS: Six EHR databases (three primary care and three secondary care) from five countries were interrogated. Dementia was ascertained by consensus harmonization of clinical/diagnostic codes. Annual period prevalences and incidences by age and gender were calculated and meta-analyzed...
July 21, 2017: Alzheimer's & Dementia: the Journal of the Alzheimer's Association
https://www.readbyqxmd.com/read/28699553/introduction-the-international-conference-on-intelligent-biology-and-medicine-icibm-2016-special-focus-on-medical-informatics-and-big-data
#14
Cui Tao, Yang Gong, Hua Xu, Zhongming Zhao
In this editorial, we first summarize the 2016 International Conference on Intelligent Biology and Medicine (ICIBM 2016) held on December 8-10, 2016 in Houston, Texas, USA, and then briefly introduce the ten research articles included in this supplement issue. At ICIBM 2016, a special theme, "Medical Informatics and Big Data," was dedicated to the recent advances of data science in the medical domain. After peer review, ten articles were selected for this special issue, covering topics such as Knowledge and Data Personalization, Social Media Applications to Healthcare, Clinical Natural Language Processing, Patient Safety Analyses, and Data Mining Using Electronic Health Records...
July 5, 2017: BMC Medical Informatics and Decision Making
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
#15
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
#16
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
#17
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...
July 1, 2017: ILAR Journal
https://www.readbyqxmd.com/read/28546849/why-a-registry-of-chronic-urticaria-cur-is-needed
#18
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
#19
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
#20
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
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