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https://www.readbyqxmd.com/read/28595734/ethics-big-data-and-computing-in-epidemiology-and-public-health
#1
Jennifer Salerno, Bartha M Knoppers, Lisa M Lee, WayWay M Hlaing, Kenneth W Goodman
PURPOSE: This article reflects on the activities of the Ethics Committee of the American College of Epidemiology (ACE). Members of the Ethics Committee identified an opportunity to elaborate on knowledge gained since the inception of the original Ethics Guidelines published by the ACE Ethics and Standards of Practice Committee in 2000. METHODS: The ACE Ethics Committee presented a symposium session at the 2016 Epidemiology Congress of the Americas in Miami on the evolving complexities of ethics and epidemiology as it pertains to "big data...
May 2017: Annals of Epidemiology
https://www.readbyqxmd.com/read/28595682/wandering-unearthing-new-tracking-devices
#2
Leah Mangini, Jeannette Y Wick
Wandering away from home or facilities is dangerous for patients with dementia and stressful for families and caregivers when those who go missing cannot be located. Up to 60% of Alzheimer's disease patients wander, and up to 50% of those who are not found within 24 hours face serious injury or death. Currently, no effective drug therapies exist to abate wandering, which has multiple causes, but emerging technologies offer a promise of comfort in being able to easily locate a missing loved one. As of 2012, 41 states had enacted Silver Alert programs that broadcast information about missing, vulnerable adults...
June 1, 2017: Consultant Pharmacist: the Journal of the American Society of Consultant Pharmacists
https://www.readbyqxmd.com/read/28578074/ethics-and-subsequent-use-of-electronic-health-record-data
#3
Lisa M Lee
The digital health landscape in the United States is evolving and electronic health record data hold great promise for improving health and health equity. Like many scientific and technological advances in health and medicine, there exists an exciting narrative about what we can do with the new technology, as well as reflection about what we should do with it based on what we value. Ethical reflections about the use of EHR data for research and quality improvement have considered the important issues of privacy and informed consent for subsequent use of data...
May 31, 2017: Journal of Biomedical Informatics
https://www.readbyqxmd.com/read/28569156/how-chinese-clinicians-face-ethical-and-social-challenges-in-fecal-microbiota-transplantation-a-questionnaire-study
#4
Yonghui Ma, Jinqiu Yang, Bota Cui, Hongzhi Xu, Chuanxing Xiao, Faming Zhang
BACKGROUND: Fecal microbiota transplantation (FMT) is reportedly the most effective therapy for relapsing Clostridium Difficile infection (CDI) and a potential therapeutic option for many diseases. It also poses important ethical concerns. This study is an attempt to assess clinicians' perception and attitudes towards ethical and social challenges raised by fecal microbiota transplantation. METHODS: A questionnaire was developed which consisted of 20 items: four items covered general aspects, nine were about ethical aspects such as informed consent and privacy issues, four concerned social and regulatory issues, and three were about an FMT bank...
May 31, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28562175/nursing-informatics-ethical-considerations-for-adopting-electronic-records
#5
Amber Wilburn
School districts are commonly adopting electronic storage systems, including electronic health records. Included in this adoption is a move toward cloud-based record storage systems to handle the increasing volumes of data. Deciding which system to adopt is especially difficult in times of tightening school district budgets. While there are several options to consider, including the outright purchase of a proprietary system or choosing one of a relatively new group of free programs, lead nurses must work to ensure that student information is protected and that any chosen system complies with privacy laws...
May 1, 2017: NASN School Nurse
https://www.readbyqxmd.com/read/28526512/privacy-trainee-rights-and-accountability-in-radiology-education
#6
REVIEW
Cory M Pfeifer
RATIONALE AND OBJECTIVES: Academic radiologists commonly hold multiple simultaneous roles within the landscape of physician training. This paper analyzes theoretical scenarios describing relationships between medical students, residents, and physician educators in radiology. MATERIALS AND METHODS: The scenarios presented involve medical student supervision, radiology resident recruitment, and resident termination with respect to relevant ethical, regulatory, and legal considerations...
June 2017: Academic Radiology
https://www.readbyqxmd.com/read/28525924/institutional-review-board-training-when-patients-and-community-members-are-engaged-as-researchers
#7
John M Westfall, Linda Zittleman, Maret Felzien, Marc Ringel, Alison Lakin, Don Nease
Background.: Patient engagement efforts often rely on a participatory research approach, which means engaging patients and community members in all aspects of research. As research team members, they require familiarity with the principles of human subject protection, privacy, and institutional review boards (IRB). However, the time required for individual IRB training may be a barrier to engaging community members in participatory research. As more community members participated in research, the State Networks of Colorado Practices and Partners (SNOCAP) was faced with finding a balance between including community members as part of the research team and the significant time commitment and institutional requirements for human subjects research oversight...
June 1, 2017: Family Practice
https://www.readbyqxmd.com/read/28525312/evaluation-of-the-introduction-of-an-e-health-skills-component-for-dietetics-students
#8
Megan E Rollo, Clare E Collins, Lesley MacDonald-Wicks
BACKGROUND: Appropriate and effective use of technology within practice is a key competency outlined in Australian dietetics training standards. An e-health skills component (lecture and workshop) was introduced to undergraduate students enrolled in an Australian nutrition and dietetics program. METHODS: The lecture orientated students to key e-health terms and concepts relating to telehealth and m-health technologies, while the workshop provided an opportunity to apply knowledge...
May 19, 2017: Telemedicine Journal and E-health: the Official Journal of the American Telemedicine Association
https://www.readbyqxmd.com/read/28501562/a-joint-venture-model-of-recontacting-in-clinical-genomics-challenges-for-responsible-implementation
#9
Sandi Dheensa, Daniele Carrieri, Susan Kelly, Angus Clarke, Shane Doheny, Peter Turnpenny, Anneke Lucassen
Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g., about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views of patients (or parents of patients) with a rare or undiagnosed condition about how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically...
May 10, 2017: European Journal of Medical Genetics
https://www.readbyqxmd.com/read/28499321/-group-discussions-in-health-services-research-part-1-introduction-and-deliberations-on-selection-of-method-and-planning
#10
Nadine Janis Pohontsch, Veronika Müller, Susanne Brandner, Christoph Karlheim, Saskia Jünger, Katharina Klindtworth, Maren Stamer, Nicole Höfling-Engels, Vera Kleineke, Benigna Brandt, Margret Xyländer, Christiane Patzelt, Thorsten Meyer
Health services researchers focus on the players, structures and impact of health care in "real life". They investigate how social aspects, financing, organizational structures, technologies and personal attitudes affect the process and outcomes of health care. Qualitative research methods are used here, which address how people act according to their unique living conditions (outside the context of experimental studies). Different methods of debriefing groups are essential for qualitative health services research...
May 12, 2017: Das Gesundheitswesen
https://www.readbyqxmd.com/read/28494333/implementing-monitoring-technologies-in-care-homes-for-people-with-dementia-a-qualitative-exploration-using-normalization-process-theory
#11
Alex Hall, Christine Brown Wilson, Emma Stanmore, Chris Todd
BACKGROUND: Ageing societies and a rising prevalence of dementia are associated with increasing demand for care home places. Monitoring technologies (e.g. bed-monitoring systems; wearable location-tracking devices) are appealing to care homes as they may enhance safety, increase resident freedom, and reduce staff burden. However, there are ethical concerns about the use of such technologies, and it is unclear how they might be implemented to deliver their full range of potential benefits...
April 27, 2017: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/28492117/biobanks-in-south-africa-a-global-perspective-on-privacy-and-confidentiality
#12
Riaan Rheeder
The Universal Declaration of Bioethics and Human Rights (UDBHR) of the United Nations Educational, Scientific and Cultural Organization (UNESCO) was adopted unanimously in 2005 by the world community as a universal guideline, according to which members of the global community were accountable to each other. Research results from UNESCO show that the UDBHR has had little or no impact in South Africa (SA). The primary objective of this article is to promote awareness of the UDBHR in SA and Africa by focusing on Article 9 of the Declaration, which accepts the right to privacy and confidentiality...
April 25, 2017: South African Medical Journal, Suid-Afrikaanse Tydskrif Vir Geneeskunde
https://www.readbyqxmd.com/read/28492116/ethical-and-legal-perspectives-on-the-medical-practitioners-use-of-social-media
#13
Brenda Kubheka
Use of social media has increased exponentially throughout the world. Social media provides a platform for building social and professional relationships that can be used by all, including healthcare professionals. Alongside the benefits of creating networks and spreading information wider and faster than is possible with traditional communication channels, however, it presents ethical and legal challenges. For health professionals, it poses a threat to confidentiality and privacy owed to patients, colleagues and employers...
April 25, 2017: South African Medical Journal, Suid-Afrikaanse Tydskrif Vir Geneeskunde
https://www.readbyqxmd.com/read/28480484/online-ethics-where-will-the-interface-of-mental-health-and-the-internet-lead-us
#14
REVIEW
Victoria Cosgrove, Emma Gliddon, Lesley Berk, David Grimm, Sue Lauder, Seetal Dodd, Michael Berk, Trisha Suppes
While e-health initiatives are poised to revolutionize delivery and access to mental health care, conducting clinical research online involves specific contextual and ethical considerations. Face-to-face psychosocial interventions can at times entail risk and have adverse psychoactive effects, something true for online mental health programs too. Risks associated with and specific to internet psychosocial interventions include potential breaches of confidentiality related to online communications (such as unencrypted email), data privacy and security, risks of self-selection and self-diagnosis as well as the shortcomings of receiving psychoeducation and treatment at distance from an impersonal website...
December 2017: International Journal of Bipolar Disorders
https://www.readbyqxmd.com/read/28480475/clinical-data-reuse-or-secondary-use-current-status-and-potential-future-progress
#15
S M Meystre, C Lovis, T Bürkle, G Tognola, A Budrionis, C U Lehmann
OBJECTIVE: To perform a review of recent research in clinical data reuse or secondary use, and envision future advances in this field. METHODS: The review is based on a large literature search in MEDLINE (through PubMed), conference proceedings, and the ACM Digital Library, focusing only on research published between 2005 and early 2016. Each selected publication was reviewed by the authors, and a structured analysis and summarization of its content was developed...
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
#16
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/28470782/h3africa-an-africa-exemplar-exploring-its-framework-on-protecting-human-research-participants
#17
Obiajulu Nnamuchi
The Human Heredity and Health in Africa (H3Africa) Consortium is a conglomeration of research and infrastructure projects spread throughout Africa whose aim is to apply genomic methodology to diseases affecting the people in the region. Its operation is innovative in the sense that it is doing something new; that is, filling a hitherto existing void in genomic research capability of African scientists and infusing resources and manpower to institutions and investigators across Africa. But aside from developing and sustaining capacity in genomic research and biorepositories, H3Africa is also invested in developing appropriate ethical regulatory regime to govern research in these areas...
May 3, 2017: Developing World Bioethics
https://www.readbyqxmd.com/read/28460118/legal-ethical-compliance-when-sharing-biospecimen
#18
Tomas Klingstrom, Erik Bongcam-Rudloff, Jane Reichel
When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-Large Prospective Cohorts project has resolved numerous such issues through intense communication between involved researchers and experts in its mission to unite large prospective study sets in Europe. To facilitate efficient communication, it is useful for nonexperts to have an at least basic understanding of the regulatory system for managing biological samples...
April 27, 2017: Briefings in Functional Genomics
https://www.readbyqxmd.com/read/28453708/towards-a-global-cancer-knowledge-network-dissecting-the-current-international-cancer-genomic-sequencing-landscape
#19
D J Vis, J Lewin, R G Liao, M Mao, F Andre, R L Ward, F Calvo, B T Teh, A A Camargo, B M Knoppers, C L Sawyers, L F A Wessels, M Lawler, L L Siu, E Voest
Background: While next generation sequencing has enhanced our understanding of the biological basis of malignancy, current knowledge on global practices for sequencing cancer samples is limited. To address this deficiency, we developed a survey to provide a snapshot of current sequencing activities globally, identify barriers to data sharing and use this information to develop sustainable solutions for the cancer research community. Methods: A multi-item survey was conducted assessing demographics, clinical data collection, genomic platforms, privacy/ethics concerns, funding sources and data sharing barriers for sequencing initiatives globally...
May 1, 2017: Annals of Oncology: Official Journal of the European Society for Medical Oncology
https://www.readbyqxmd.com/read/28452627/sexual-consent-capacity-ethical-issues-and-challenges-in-long-term-care
#20
Jennifer Hillman
More than two million Americans live in nursing homes and other long-term care facilities. Available research suggests that the majority of older nursing home residents, including those with some degree of cognitive impairment, place significant value upon a variety of sexual activities. With nearly half of all residents suffering from dementia, psychologists and other mental health professionals often face significant challenges in the assessment of their patients' sexual consent capacity. A primary ethical issue is to balance an individual resident's rights to autonomy and privacy with a facility's need to protect residents from harm...
January 2017: Clinical Gerontologist
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