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informatics ethics

Rebekah Frankson, William Hueston, Kira Christian, Debra Olson, Mary Lee, Linda Valeri, Raymond Hyatt, Joseph Annelli, Carol Rubin
The emergence of complex global challenges at the convergence of human, animal, and environmental health has catalyzed a movement supporting "One Health" approaches. Despite recognition of the importance of One Health approaches to address these complex challenges, little effort has been directed at identifying the seminal knowledge, skills, and attitudes necessary for individuals to successfully contribute to One Health efforts. Between 2008 and 2011, three groups independently embarked on separate initiatives to identify core competencies for professionals involved with One Health approaches...
2016: Frontiers in Public Health
Angela Huttner, Leonard Leibovici, Ursula Theuretzbacher, Benedikt Huttner, Mical Paul
The informed consent document is intended to provide basic rights to patients but often fails to do so. Patients' autonomy may be diminished by virtue of their illness; evidence shows that even patients who appear to be ideal candidates for understanding and granting informed consent rarely are-particularly those with acute infections. We argue that, for low-risk trials whose purpose is to evaluate non-experimental therapies or other measures toward which the medical community is in a state of equipoise, ethics committees should play a more active role in a more standardized fashion...
August 3, 2016: Clinical Microbiology and Infection
(no author information available yet)
The pHealth 2016 Conference is the 13th in a series of scientific events bringing together expertise from medical, technological, political, administrative, legal and social domains. pHealth 2016 opens a new chapter in the success story of the series of international conferences on wearable or implantable micro, nano and biotechnologies for personalized health. Starting in 2003 with personal health management systems, pHealth has continuously extended its scope evolving to a truly interdisciplinary event by covering technological and biomedical facilities, legal, ethical, social, and organizational requirements and impacts as well as necessary basic research for enabling the future proof care paradigms...
2016: Studies in Health Technology and Informatics
T Fischer, K B Brothers, P Erdmann, M Langanke
BACKGROUND: Systems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology (especially systems biology); "big data" statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working to generate systems medicine knowledge and clinicians working to apply it...
2016: BMC Medical Ethics
Michael Rigby, Elske Ammenwerth, Jan Talmon
Evidence-based health informatics (EBHI) is a key concept in the development and deployment of IT systems and applications in an ethical, efficient and effective health system. There is an ever growing body of knowledge to guide IT-related decision making, but further growth of this body of knowledge is required as the health IT domain and technologies are continuously evolving, leading to new functionalities and applications. However, EBHI should not wait until retrospective evidence is available - increasingly policy makers should draw on available prior and external evidence to influence design and development processes so as to ensure that health IT is devised in response to a delivery process need and not as an IT driven goal...
2016: Studies in Health Technology and Informatics
Estela S Estape, Mary Helen Mays, Elizabeth A Sternke
Personalized medicine is the development of 'tailored' therapies that reflect traditional medical approaches, with the incorporation of the patient's unique genetic profile and the environmental basis of the disease. These individualized strategies encompass disease prevention, diagnosis, as well as treatment strategies. Today's healthcare workforce is faced with the availability of massive amounts of patient- and disease-related data. When mined effectively, these data will help produce more efficient and effective diagnoses and treatment, leading to better prognoses for patients at both the individual and population level...
January 2016: Intelligent Information Management
Jed D Gonzalo, Michael Dekhtyar, Stephanie R Starr, Jeffrey Borkan, Patrick Brunett, Tonya Fancher, Jennifer Green, Sara Jo Grethlein, Cindy Lai, Luan Lawson, Seetha Monrad, Patricia O'Sullivan, Mark D Schwartz, Susan Skochelak
PURPOSE: The authors performed a review of 30 Accelerating Change in Medical Education full grant submissions and an analysis of the health systems science (HSS)-related curricula at the 11 grant recipient schools to develop a potential comprehensive HSS curricular framework with domains and subcategories. METHOD: In phase 1, to identify domains, grant submissions were analyzed and coded using constant comparative analysis. In phase 2, a detailed review of all existing and planned syllabi and curriculum documents at the grantee schools was performed, and content in the core curricular domains was coded into subcategories...
April 5, 2016: Academic Medicine: Journal of the Association of American Medical Colleges
Kaname Nakatani, Ikuyo Mochiki
Advanced genomic analytical technologies are developing and challenging the current framework of clinical laboratory testing. However, most genomic tests have been devised as laboratory-developed tests (LDTs) without sufficient validation of their analytical validity. Quality assurance (QA) of tests is mandatory for routine clinical practice. External quality management systems such as ISO add QA. Other than QAs of pre-analysis, analytical procedures, reports, and laboratory personnel should be regularly assessed using appropriate best practices and guidelines for analytical validity...
March 2015: Rinsho Byori. the Japanese Journal of Clinical Pathology
Philip R Quinlan, Martin Groves, Lee B Jordan, Hilary Stobart, Colin A Purdie, Alastair M Thompson
The challenges facing biobanks are changing from simple collections of materials to quality-assured fit-for-purpose clinically annotated samples. As a result, informatics awareness and capabilities of a biobank are now intrinsically related to quality. A biobank may be considered a data repository, in the form of raw data (the unprocessed samples), data surrounding the samples (processing and storage conditions), supplementary data (such as clinical annotations), and an increasing ethical requirement for biobanks to have a mechanism for researchers to return their data...
October 2015: Biopreservation and Biobanking
H P Lehmann, B E Dixon, H Kharrazi
OBJECTIVES: To survey advances in public health and epidemiology informatics over the past three years. METHODS: We conducted a review of English-language research works conducted in the domain of public health informatics (PHI), and published in MEDLINE between January 2012 and December 2014, where information and communication technology (ICT) was a primary subject, or a main component of the study methodology. Selected articles were synthesized using a thematic analysis using the Essential Services of Public Health as a typology...
August 13, 2015: Yearbook of Medical Informatics
Patricia Flatley Brennan, Suzanne Bakken
PURPOSE: Contemporary big data initiatives in health care will benefit from greater integration with nursing science and nursing practice; in turn, nursing science and nursing practice has much to gain from the data science initiatives. Big data arises secondary to scholarly inquiry (e.g., -omics) and everyday observations like cardiac flow sensors or Twitter feeds. Data science methods that are emerging ensure that these data be leveraged to improve patient care. ORGANIZING CONSTRUCT: Big data encompasses data that exceed human comprehension, that exist at a volume unmanageable by standard computer systems, that arrive at a velocity not under the control of the investigator and possess a level of imprecision not found in traditional inquiry...
September 2015: Journal of Nursing Scholarship
Philippe Chastonay, Véronique Zesiger, Roberto Moretti, Marco Cremaschini, Rebecca Bailey, Erika Wheeler, Thomas Mattig, Djona Atchenemou Avocksouma, Emmanuel Kabengele Mpinga
BACKGROUND: Shortage of a competent public health workforce is as a worldwide problem. The situation is especially bad in sub-Saharan Africa. In 2008, the World Health Organization and the Global Health Workforce Alliance launched a call for proposals for a public health training programme with an emphasis on health workforce development specifically targeting Africa. Our article presents the development, implementation and evaluation of an e-learning Master of Advanced Studies in Public Health on Workforce Development...
2015: Human Resources for Health
Lars Botin
Narration is central, even crucial, when it comes to embracing the whole individual, continuity of care, and responsible (ethical) handling of the technological construction of the self that takes place in health informatics. This paper will deal with the role of narratives in the construction of health informatics platforms and how different voices should have space for speech on these platforms. Theoretically the paper takes an outset in the actant model for narratives by the French-Lithuanian theorist of linguistics and literature A...
2015: Studies in Health Technology and Informatics
Hsiu-Chu Liu, Hsing Li, Hsin-Fei Chang, Mei-Rou Lu, Feng-Chuan Chen
Learning from the experience of another medical center in Taiwan, Kaohsiung Municipal Kai-Suan Psychiatric Hospital has changed the nursing informatics system step by step in the past year and a half . We considered ethics in the original idea of implementing barcodes on the test tube labels to process the identification of the psychiatric patients. The main aims of this project are to maintain the confidential information and to transport the sample effectively. The primary nurses had been using different work sheets for this project to ensure the acceptance of the new barcode system...
2015: Studies in Health Technology and Informatics
(no author information available yet)
This book has been written by a group of renowned and experienced international researchers from nine countries, who share here how they have applied Techno-Anthropological methodologies to their research in a variety of different health informatics contexts. Bridges have been built in the process of editing and writing this book, and we are now actually building Techno-Anthropological research constructions in research environments in Denmark, Australia, Canada, Finland and Israel. This is the third major work on Techno-Anthropology, following What is Techno-Anthropology? (2013) edited by Tom Børsen and Lars Botin and a special issue on Techno-Anthropology in Techné: Journal of the Society for Philosophy and Technology - edited by Galit Wellner, Lars Botin and Kathrin Otrel-Cass (2015)...
2015: Studies in Health Technology and Informatics
Åke Walldius, Nils-Göran Olve, Hedvig Aminoff
As costs for healthcare are rising in society, information systems are often seen as enablers of new cost-saving healthcare processes. But an on-going deployment of a wide range of new kinds of systems requires close attention to interoperability between new and legacy systems. Another challenge is to assure that the healthcare professions are given realistic opportunities to play an active part in designing the new ways of working that the new, integrated systems are designed to support. We argue that a feasible way to approach such a user participation in design of work processes and systems is to extend well known user-survey and strategy-mapping methods with the new value-based healthcare approach which invites health professionals to participate in strategic assessments of health outcome and costs along the care chain in which they work...
2015: Studies in Health Technology and Informatics
Lone Stub Petersen
Studying technology will often involve studying change - or in the perspective of this chapter should involve not just studying but also actively being involved with change. Your presence and the questions you ask shape the way people think and act and on the other hand their responses and your study of practice change the researchers perspective. For Techno-Anthropologist, this means that asking in specific ways about technology and having a focus on technology in the data collection and fieldwork will (should) influence what they see, the data they collect and their analysis - and also the way the informants think and the way people talk about practice and technology...
2015: Studies in Health Technology and Informatics
Ming-Chao Wong, Helen Almond, Elizabeth Cummings, Erin Roehrer, Chris Showell, Paul Turner
This chapter explores how Techno-Anthropology can contribute to more explicitly professional and ethically responsible reflections on the socio-technical practices involved in meaningfully engaging patients in health informatics research. The chapter draws on insights from health informatics research projects focused on chronic disease and self-management conducted in Tasmania during the last 10 years. Through these projects the paper explores three topics of relevance to 'meaningful engagement' with patients: (i) Patient Self-Management and Chronic Disease (ii) Patients as Users in Health Informatics research, and, (iii) Evaluations of outcomes in Health and Health Informatics Interventions...
2015: Studies in Health Technology and Informatics
Jean F Wyman, Susan J Henly
Preparing nursing doctoral students with knowledge and skills for developing science, stewarding the discipline, and educating future researchers is critical. This study examined the content of 120 U.S. PhD programs in nursing as communicated on program websites in 2012. Most programs included theory, research design, and statistics courses. Nursing inquiry courses were evidenced on only half the websites. Course work or research experiences in informatics were mentioned on 22.5% of the websites; biophysical measurement and genetics/genomics were mentioned on fewer than 8% of program websites...
July 2015: Nursing Outlook
Bonnie Kaplan
Two court cases that involve selling prescription data for pharmaceutical marketing affect biomedical informatics, patient and clinician privacy, and regulation. Sorrell v. IMS Health Inc. et al. in the United States and R v. Department of Health, Ex Parte Source Informatics Ltd. in the United Kingdom concern privacy and health data protection, data de-identification and reidentification, drug detailing (marketing), commercial benefit from the required disclosure of personal information, clinician privacy and the duty of confidentiality, beneficial and unsavory uses of health data, regulating health technologies, and considering data as speech...
July 2015: Cambridge Quarterly of Healthcare Ethics: CQ: the International Journal of Healthcare Ethics Committees
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