scholarly journals Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems

2017 ◽  
Vol 35 (20) ◽  
pp. 2315-2323 ◽  
Author(s):  
Reshma Jagsi ◽  
Kent A. Griffith ◽  
Aaron Sabolch ◽  
Rochelle Jones ◽  
Rebecca Spence ◽  
...  
Keyword(s):  
Medical Information ◽  
Ethical Issues ◽  
Secondary Data ◽  
Sociodemographic Factors ◽  
Learning Systems ◽  
Weighted Mean ◽  
Rapid Learning ◽  
Patients With Cancer ◽  
Secondary Use ◽  
Oncology Care

Purpose To inform the evolving implementation of CancerLinQ and other rapid-learning systems for oncology care, we sought to evaluate perspectives of patients with cancer regarding ethical issues. Methods Using the GfK Group online research panel, representative of the US population, we surveyed 875 patients with cancer; 621 (71%) responded. We evaluated perceptions of appropriateness (scored from 1 to 10; 10, very appropriate) using scenarios and compared responses by age, race, and education. We constructed a scaled measure of comfort with secondary use of deidentified medical information and evaluated its correlates in a multivariable model. Results Of the sample, 9% were black and 9% Hispanic; 38% had completed high school or less, and 59% were age ≥ 65 years. Perceptions of appropriateness were highest when consent was obtained and university researchers used data to publish a research study (weighted mean appropriateness, 8.47) and lowest when consent was not obtained and a pharmaceutical company used data for marketing (weighted mean appropriateness, 2.7). Most respondents (72%) thought secondary use of data for research was very important, although those with lower education were less likely to endorse this (62% v 78%; P < .001). Overall, 35% believed it was necessary to obtain consent each time such research was to be performed; this proportion was higher among blacks/Hispanics than others (48% v 33%; P = .02). Comfort with the use of deidentified information from medical records varied by scenario and overall was associated with distrust in the health care system. Conclusion Perceptions of patients with cancer regarding secondary data use depend on the user and the specific use of the data, while also frequently differing by patient sociodemographic factors. Such information is critical to inform ongoing efforts to implement oncology learning systems.

scholarly journals Patient Perspectives on the Ethical Implementation of a Rapid Learning System for Oncology Care

2017 ◽  
Vol 13 (3) ◽  
pp. e163-e175 ◽  
Author(s):  
Rochelle D. Jones ◽  
Aaron N. Sabolch ◽  
Erin Aakhus ◽  
Rebecca A. Spence ◽  
Angela R. Bradbury ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Learning System ◽  
Patient Perspectives ◽  
Attitudes And Beliefs ◽  
Sensitive Data ◽  
Rapid Learning ◽  
Patients With Cancer ◽  
Interview Guide ◽  
Oncology Care ◽  
Virtuous Cycle

Introduction: A rapid learning system (RLS) of health care harnesses data generated from routine patient care to create a virtuous cycle of data collection and analysis for quality improvement and research. The success of such systems depends on understanding patient perspectives regarding the ethical issues that arise from the ongoing implementation of this transformative concept. Methods: An interview guide was designed to evaluate patient perspectives to inform the ethical implementation of an oncology RLS. A purposively selected, diverse sample of 32 patients with cancer was recruited from two institutions to participate in semistructured, in-depth interviews for formal qualitative analysis. Results: The extent to which respondents expressed discomfort with more permissive system features (less formal notification/consent, broader uses/users, inclusion of sensitive data) reflected their trust, which in turn seemed to vary by sociodemographic features. It was also influenced by their familiarity with technology and their attitudes and beliefs regarding privacy and the use of electronic medical records more generally. Distrust of insurers and the pharmaceutical industry led subjects to desire greater oversight and restriction of these potential users of the system. Subjects were most comfortable when doctors were the primary users, engaged patients directly in the notification and consent discussion, and oversaw the system. Conclusion: Those actively developing RLSs should recognize the critical importance of trust and the key role that doctors will need to play in order for such systems to be successful and to ensure that their implementation is ethically palatable to the patients whose data are being included.

The Ethics of Health Information Technology in Oncology: Emerging Isssues from Both Local and Global Perspectives

2013 ◽  
pp. 136-142 ◽  
Author(s):  
Thomas W. LeBlanc ◽  
Lawrence N. Shulman ◽  
Peter P. Yu ◽  
Bradford R. Hirsch ◽  
Amy P. Abernethy
Keyword(s):  
Information Technology ◽  
Health Information Technology ◽  
Health Information ◽  
Ethical Issues ◽  
Learning Systems ◽  
Rapid Learning ◽  
Global Perspectives ◽  
Fundamental Part ◽  
Correct Path ◽  
Careful Thought

Health information technology (HIT) is ever-increasing in complexity and has incrementally become a fundamental part of our everyday clinical lives. As HIT becomes more complex and commonplace, so do the questions it raises about stewardship and usage of data, along with the ethics of these applications. With the development of rapid-learning systems, such as ASCO's CancerLinQ, careful thought about the ethics and applications of these technologies is necessary. This article uses the principles-based framework of modern bioethics to examine evolving ethical issues that arise in the context of HIT and also discusses HIT's application in reducing cancer care disparities in the developing world. We recognize that this topic is quite broad, so here we provide an overview of the issues, rather than any definitive conclusions about a particular “correct path.” Our hope is to stimulate discussion about this important topic, which will increasingly need to be addressed in the oncology community.

scholarly journals Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?

2021 ◽  
pp. 1-8
Author(s):  
Janessa Mladucky ◽  
Bonnie Baty ◽  
Jeffrey Botkin ◽  
Rebecca Anderson
Keyword(s):  
Genetic Testing ◽  
Secondary Data ◽  
Structured Interviews ◽  
Customer Data ◽  
Secondary Use ◽  
Data Usage ◽  
Direct To Consumer ◽  
New Information ◽  
Opt Out ◽  
Potential Risks

Introduction: Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results. Objective: The goals of this study were to determine customer knowledge of secondary uses of data, to understand their perception of risks associated with these uses, and to determine the extent of customer concerns about privacy. Methods: Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes. Results: Most participants were aware of some secondary uses of data. All participants felt that data usage for research was acceptable, but acceptability for non-research purposes varied across participants. The majority of participants were aware of the existence of a privacy policy, but few read the majority of the privacy statement. When previously unconsidered uses of data were discussed, some participants expressed concern over privacy protections for their data. Conclusion: When exposed to new information on secondary uses of data, customers express concerns and a desire to improve consent with transparency, more opt-out options, improved readability, and more information on future uses and potential risks from direct-to-consumer companies. Effective ways to improve readership about the secondary use, risk of use, and protection of customer data should be investigated and the findings implemented by DTC companies to protect public trust in these practices.

scholarly journals Eva between anxiety and hope: integrating anthroposophic music therapy in supportive oncology care

2015 ◽  
Vol 3 (3) ◽  
Author(s):  
Eran Ben-Arye ◽  
Yotam Ben-Arye ◽  
Yael Barak
Keyword(s):  
Music Therapy ◽  
Well Being ◽  
Recurrent Ovarian Cancer ◽  
Anthroposophic Medicine ◽  
Patients With Cancer ◽  
Therapy Goals ◽  
Chemotherapy Side Effects ◽  
Oncology Care ◽  
Supportive Oncology ◽  
Therapy Interventions

Music therapy is a significant modality in the treatment of patients with cancer, who suffer emotional and spiritual distress as well as chemotherapy side effects that impair their quality of life. In this article, we present a case study of a patient challenged with recurrent ovarian cancer who received, concomitant with chemotherapy, a special form of music therapy based on anthroposophic medicine (AM) aimed at alleviating anxiety and improving her general well-being. AM-centered music therapy goals are discussed in regard to two modes of treatment: receptive listening and clinical composition. Next, these two treatment modes are discussed in a broader context by reviewing conventional music therapy interventions during chemotherapy on two axes: a. standardized vs. individualized treatment; b. patient’s involvement on a passive to active continuum. In conclusion, psycho-oncology care can be enriched by adding anthroposophic medicine-oriented music therapy integrated within patients’ supportive care.

scholarly journals Gender difference in betel quid consumption levels and tobacco use among adults in Myanmar

2021 ◽  
Vol 10 (1) ◽  
pp. 159
Author(s):  
Yin Min Aye ◽  
Seo Ah Hong ◽  
Bang-On Thepthien ◽  
Sariyamon Tiraphat
Keyword(s):  
Tobacco Use ◽  
Multinomial Logistic Regression ◽  
Secondary Data ◽  
Positive Association ◽  
Sociodemographic Factors ◽  
Betel Quid ◽  
P Value ◽  
Cross Sectional ◽  
Betel Quid Chewing ◽  
No Consumption

Several small scaled studies in Myanmar investigated determinants of betel quid chewing status but to better understand more complete profiles of betel quid chewing habits, this study investigated the associations of betel quid consumption levels with tobacco and sociodemographic factors using a nationally representative sample in Myanmar. A cross-sectional, secondary data analysis was conducted by using Myanmar demographic and health survey (MDHS) (2015-2016). Chi-square tests and multinomial logistic regression were performed with p-value&lt;0.05 as significance. Men averagely chewed 5.59 (SD=8.229) pieces per day while women chewed 1.25 (SD=3.584) pieces. The prevalence of chewing daily pieces 1-2, 3-5 and 6+ were 7.9%, 17.1% and 34.2% for men and 6.1%, 8% and 7.1 %, respectively, for women. In multivariate analysis, low education, low family wealth, married, and urban were more likely to chew 6+ pieces per day relevant to no consumption in both genders, while a positive association with age was observed only in women. Tobacco use was associated with low consumption level (1-2 pieces), relative to no consumption in both genders. Therefore, this study underlined the need to improve knowledge on the dangers associated with betel quid chewing and tobacco use among socially disadvantaged populations and urban residents.

scholarly journals Complementary learning systems within the hippocampus: A neural network modeling approach to reconciling episodic memory with statistical learning

2016 ◽  
Author(s):  
Anna C. Schapiro ◽  
Nicholas B. Turk-Browne ◽  
Matthew M. Botvinick ◽  
Kenneth A. Norman
Keyword(s):  
Neural Network ◽  
Statistical Learning ◽  
Entorhinal Cortex ◽  
Network Modeling ◽  
Learning Systems ◽  
Neural Network Modeling ◽  
Trade Off ◽  
Rapid Learning ◽  
Rapid Extraction

AbstractA growing literature suggests that the hippocampus is critical for the rapid extraction of regularities from the environment. Although this fits with the known role of the hippocampus in rapid learning, it seems at odds with the idea that the hippocampus specializes in memorizing individual episodes. In particular, the Complementary Learning Systems theory argues that there is a computational trade-off between learning the specifics of individual experiences and regularities that hold across those experiences. We asked whether it is possible for the hippocampus to handle both statistical learning and memorization of individual episodes. We exposed a neural network model that instantiates known properties of hippocampal projections and subfields to sequences of items with temporal regularities. We found that the monosynaptic pathway — the pathway connecting entorhinal cortex directly to region CA1 — was able to support statistical learning, while the trisynaptic pathway — connecting entorhinal cortex to CA1 through dentate gyrus and CA3 — learned only individual episodes, with apparent representations of regularities resulting from associative reactivation through recurrence. Thus, in paradigms involving rapid learning, the computational trade-off between learning episodes and regularities may be handled by separate anatomical pathways within the hippocampus itself.

scholarly journals Factors Associated with the Quality of Life of Patients with Cancer Undergoing Radiotherapy

2021 ◽  
Vol 18 (1) ◽  
pp. 80-87
Author(s):  
Ki Ho Seol ◽  
Su Hyun Bong ◽  
Dae Hun Kang ◽  
Jun Won Kim
Keyword(s):  
Quality Of Life ◽  
Adjustment Disorder ◽  
Multivariate Regression Analysis ◽  
Sociodemographic Factors ◽  
Nausea And Vomiting ◽  
Financial Difficulty ◽  
Factors Affecting ◽  
Patients With Cancer ◽  
Related Quality

Objective Approximately half of patients with cancer have comorbidities, such as adjustment disorder, major depressive disorder, and delirium. Radiotherapy can cause psychological problems, e.g., the fear of treatment and its side effects, anxiety, depression, and social isolation. Health-related quality of life (QoL) must be determined to evaluate the effectiveness of cancer treatment. We analyzed the clinical, psychological, and sociodemographic factors influencing the QoL of patients with cancer who were undergoing radiotherapy.Methods Twenty-six patients undergoing radiotherapy (10 male, 16 female) were included. Sociodemographic and clinical data were collected prior to radiotherapy. Psychosocial factors were assessed by self-reported questionnaires before, immediately after, and 3 months after radiotherapy. A multivariate regression analysis identified factors affecting QoL at each time point.Results Patients’ diagnoses were breast, cervical, prostate, endometrial, rectal, hypopharyngeal, laryngeal, liver, gallbladder, esophageal, ovarian, lung, and skin cancers. Before radiotherapy, better resilience was significantly associated with a higher QoL score (R<sup>2</sup>=0.199, p=0.033). Immediately after radiotherapy, financial difficulty was significantly associated with a lower QoL score (R<sup>2</sup>=0.274, p=0.010). Three months after radiotherapy, the presence of chronic disease (R<sup>2</sup>=0.398, p=0.002) and the severity of nausea and vomiting were significantly associated with a lower QoL score (R<sup>2</sup>=0.278, p=0.014).Conclusion Resilience, financial difficulty, the presence of chronic diseases, and the severity of nausea and vomiting significantly influenced the QoL of patients with cancer who were undergoing radiotherapy. Factors affecting QoL varied at each time point. Thus, patients with cancer should undergo regular mental health assessments, including assessments of QoL. Multidimensional (physical, psychological, and social) approaches and individualized time-based interventions are needed to improve the QoL of cancer patients undergoing radiotherapy.

The Implications of Unethical and Illegal Behavior in the World of E-Commerce

2021 ◽  
pp. 1656-1719
Author(s):  
Adel Ismail Al-Alawi ◽  
Arpita Anshu Mehrotra ◽  
Hala Elias ◽  
Hina S. M. Safdar ◽  
Sara Abdulrahman Al-Bassam
Keyword(s):  
Ethical Issues ◽  
User Behavior ◽  
Secondary Data ◽  
Primary Data ◽  
Illegal Behavior ◽  
Online Retailers ◽  
Online Business ◽  
Ethical And Legal Issues ◽  
The Common ◽  
Legal And Ethical Issues

The main focus of this chapter is to identify the behaviors of the consumers and sellers of e-commerce in Bahrain. It also seeks to understand the ethical and legal issues faced by the users of e-commerce and the various reasons for such behavior. The perception of the consumers regarding online retailers discussed through appropriate measures and research data. The chapter clearly explains the historical development of e-commerce in Bahrain and the processes and procedures of setting up an online business in the country. The common legal and ethical issues faced by the consumers discussed in detail and supported by different models to understand user behavior. The research onion method used to gather quantitative and qualitative data. The primary data collected through questionnaires and interviews whereas the secondary data collected through literature. The data analysis shows the results of the mixed method supported by different graphs and models. The different recommendations provided to solve the most prevalent problems confronted by the buyers and the sellers of e-commerce.

Computers in medicine and health care

2019 ◽  
Author(s):  
Ronald M. Baecker
Keyword(s):  
Health Care ◽  
Precision Medicine ◽  
Human Body ◽  
Medical Information ◽  
Adverse Drug Events ◽  
Ethical Issues ◽  
Body Parts ◽  
Huge Impact ◽  
Working Together ◽  
Online Availability

As with the chapter on learning, we begin our discussion of health applications by examining influential early visions of the possible role of computers in improving health care and medicine. We then look at the great variety of roles played by current digital technologies in this field. We first consider the online availability of health information. There are two possible sources: one from respected centres of expertise, the other from consumers of medical care, that is, patients, who in working together form what may be viewed as communities of care. There is strong evidence that people are using these online medical resources to become more intelligent guardians of their own health and to support themselves when seeking help from physicians. Next, we examine the care improvements promised by personal health and electronic medical records. Progress here has been disappointingly slow; we shall discuss the mix of technical, cultural, administrative, interpersonal, and financial reasons for the sluggishness in development and deployment. Two particularly interesting cases of medical information are data dealing with adverse drug reactions and interactions, commonly known as adverse drug events (ADEs), and the use of big data and social media in epidemic surveillance and control, by which we are becoming better equipped to indicate, predict, and track outbreaks of disease. Computers have made a huge impact on medical education through the development of human body simulators. There also continue to be more and more advanced uses of technology embedded within the human body, either to augment the functioning of organs or to replace body parts that no longer work, which could possibly result in bionic people or androids in the future. We shall present some examples indicating the pace at which these technologies are developing. Recent advances in understanding the human genome have enabled a new form of medicine called precision medicine. The goal is to use genetic screening of patients to enable more specific treatments than were hitherto possible. Precision medicine also enables what some call designer babies. We shall introduce policy and ethical issues raised by this concept.

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