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.

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 Qualitative Study of Oncologists’ Views on the CancerLinQ Rapid Learning System

2017 ◽  
Vol 13 (3) ◽  
pp. e176-e184 ◽  
Author(s):  
Rachel M. Mayo ◽  
Julie F. Summey ◽  
Joel E. Williams ◽  
Rebecca A. Spence ◽  
Shally Kim ◽  
...  
Keyword(s):  
Clinical Decision Making ◽  
Ethical Issues ◽  
Health Care Systems ◽  
Clinical Decision ◽  
Learning System ◽  
Patient Identification ◽  
Rapid Learning ◽  
Ethical Implications ◽  
Patient Consent ◽  
The Impact

Introduction: ASCO is actively developing CancerLinQ (CLQ), a rapid learning system for oncology care. The purpose of this study was to explore providers’ opinions and concerns related to implementation of CLQ, including ethical issues. Methods: Twenty key informant oncologists were recruited for individual in-depth interviews through ASCO contacts, purposively selected to represent a wide variety of cancer specialties as well as different levels of familiarity with CLQ (familiar v unfamiliar). Qualitative data analysis was completed by a three-member team using an inductive narrative approach. Themes were examined by participants familiar and unfamiliar with CLQ, and quotations exemplifying each theme are provided. Results: Participants’ opinions centered on three main themes: (1) general attitudes regarding learning health care systems, (2) optimal approach to patient consent, and (3) appropriateness of data use. There was clear support for the use of big data in clinical decision making for patients and in research. Unfamiliar participants expressed concerns regarding system protections against patient identification, and both familiar and unfamiliar participants discussed the dilemma of including genetic information. Respondents were in agreement with notifying patients early; however, there was debate over whether patients should opt in or opt out. Overall, there was great concern regarding sharing data with drug companies and insurers. Conclusion: Understanding oncologists’ perspectives regarding the ethical implications of CLQ implementation is critical to its success. More research is needed on the impact of rapid learning systems on providers, patients, health systems, and the ultimate effect on cancer care.

This Is a Different Patient Population: Opioid Prescribing Challenges for Patients With Cancer-Related Pain

2021 ◽  
pp. OP.20.01041
Author(s):  
Yael Schenker ◽  
Megan Hamm ◽  
Hailey W. Bulls ◽  
Jessica S. Merlin ◽  
Rachel Wasilko ◽  
...  
Keyword(s):  
Pain Treatment ◽  
The United States ◽  
Opioid Epidemic ◽  
Educational Materials ◽  
Opioid Prescribing ◽  
Patients With Cancer ◽  
Qualitative Interview Study ◽  
Interview Guide ◽  
Additional Support ◽  
Noncancer Pain

PURPOSE: Responses to the opioid epidemic in the United States, including efforts to monitor and limit prescriptions for noncancer pain, may be affecting patients with cancer. Oncologists' views on how the opioid epidemic may be influencing treatment of cancer-related pain are not well understood. METHODS: We conducted a multisite qualitative interview study with 26 oncologists from a mix of urban and rural practices in Western Pennsylvania. The interview guide asked about oncologists' views of and experiences in treating cancer-related pain in the context of the opioid epidemic. A multidisciplinary team conducted thematic analysis of interview transcripts to identify and refine themes related to challenges to safe and effective opioid prescribing for cancer-related pain and recommendations for improvement. RESULTS: Oncologists described three main challenges: (1) patients who receive opioids for cancer-related pain feel stigmatized by clinicians, pharmacists, and society; (2) patients with cancer-related pain fear becoming addicted, which affects their willingness to accept prescription opioids; and (3) guidelines for safe and effective opioid prescribing are often misinterpreted, leading to access issues. Suggested improvements included educational materials for patients and families, efforts to better inform prescribers and the public about safe and appropriate uses of opioids for cancer-related pain, and additional support from pain and/or palliative care specialists. CONCLUSION: Challenges to safe and effective opioid prescribing for cancer-related pain include opioid stigma and access barriers. Interventions that address opioid stigma and provide additional resources for clinicians navigating complex opioid prescribing guidelines may help to optimize cancer pain treatment.

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 Developing Best Practice in Linking and Sharing Administrative Data – A Comparison of Views in Health and Higher Education

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Annette Braunack-Mayer ◽  
Stacy Carter ◽  
Tam Ha ◽  
Xiaoqi Feng ◽  
...  
Keyword(s):  
Higher Education ◽  
Administrative Data ◽  
Policy Development ◽  
Best Practice ◽  
Ethical Issues ◽  
Health Sector ◽  
Clear Understanding ◽  
Data Governance ◽  
Sensitive Data ◽  
Wide Range

IntroductionLarge administrative datasets are now being used for secondary purposes across a wide range of public sector organisations, including in health and higher education. However, governance, regulation and policy surrounding the use of these datasets are at different stages of development in these sectors. Our aim was to explore similarities and differences in the use of administrative data between the health and higher education sectors to inform policy development. Objectives and ApproachWe investigated views on the use of administrative data in both the health and higher education sectors. We conducted 18 qualitative in-depth interviews with key stakeholders, to provide insight into the ethical, social and legal issues associated with the use of big data in these settings. The interviews were transcribed and thematically coded. ResultsParticipants indicated the rapid pace of technological change and large volume of potentially sensitive data collected raises governance, infrastructure and ethical issues in both settings. Common challenges include communication, staff capabilities, delays in access, multiple policies and governance committees, and technical and operational issues. In the health sector, there was clear understanding of the issues and governance structures to address these issues, whereas this understanding was more variable in the higher education sector. Trust in government (to use responsibly and store securely) was raised in the health sector but not in universities. Conclusion / ImplicationsUnderstanding and use of administrative data are at quite different levels of development in the higher education and health sectors. Higher education needs policy and ethical guidance and higher level governance and greater consultation across the sector. Both sectors would benefit from a national approach to data governance.

scholarly journals Machine learning for human learners: opportunities, issues, tensions and threats

2020 ◽  
Author(s):  
Mary E. Webb ◽  
Andrew Fluck ◽  
Johannes Magenheim ◽  
Joyce Malyn-Smith ◽  
Juliet Waters ◽  
...  
Keyword(s):  
Machine Learning ◽  
Deep Learning ◽  
Ethical Issues ◽  
Practical Experience ◽  
Learning Systems ◽  
Learning System ◽  
Adaptive Behaviour ◽  
Recent Developments ◽  
Key Aspects ◽  
School Curricula

AbstractMachine learning systems are infiltrating our lives and are beginning to become important in our education systems. This article, developed from a synthesis and analysis of previous research, examines the implications of recent developments in machine learning for human learners and learning. In this article we first compare deep learning in computers and humans to examine their similarities and differences. Deep learning is identified as a sub-set of machine learning, which is itself a component of artificial intelligence. Deep learning often depends on backwards propagation in weighted neural networks, so is non-deterministic—the system adapts and changes through practical experience or training. This adaptive behaviour predicates the need for explainability and accountability in such systems. Accountability is the reverse of explainability. Explainability flows through the system from inputs to output (decision) whereas accountability flows backwards, from a decision to the person taking responsibility for it. Both explainability and accountability should be incorporated in machine learning system design from the outset to meet social, ethical and legislative requirements. For students to be able to understand the nature of the systems that may be supporting their own learning as well as to act as responsible citizens in contemplating the ethical issues that machine learning raises, they need to understand key aspects of machine learning systems and have opportunities to adapt and create such systems. Therefore, some changes are needed to school curricula. The article concludes with recommendations about machine learning for teachers, students, policymakers, developers and researchers.

scholarly journals Attitudes and Beliefs of Eastern European Consumers Towards Animal Welfare

Animals ◽  
2020 ◽  
Vol 10 (7) ◽  
pp. 1220 ◽  
Author(s):  
Igor Tomasevic ◽  
Ivan Bahelka ◽  
Jaroslav Čítek ◽  
Marjeta Čandek-Potokar ◽  
Ilija Djekić ◽  
...  
Keyword(s):  
Czech Republic ◽  
Animal Welfare ◽  
Ethical Issues ◽  
Sociodemographic Characteristics ◽  
Attitudes And Beliefs ◽  
Eastern European ◽  
Segmentation Analysis ◽  
Cross Country ◽  
Eastern European Countries ◽  
Beliefs And Attitudes

The aim of this exploratory work, because of the existing bias on the size of the sample and some of the sociodemographic characteristics of the participants, was to investigate the Eastern European consumers’ beliefs and attitudes toward animal welfare, to perform a cross-country segmentation analysis and to observe possible differences with their Western European counterparts. For this purpose, a survey was conducted with 5508 consumers from 13 Eastern European countries (Bosnia and Herzegovina, Bulgaria, Czech Republic, Croatia, North Macedonia, Hungary, Moldova, Poland, Romania, Serbia, Slovakia, Slovenia, and Ukraine) using a questionnaire with nine statements about consumers beliefs regarding animal welfare (aspects of management, ethical issues about animals, and consequences of animal welfare on meat quality and price), one statement about the willingness to pay more for meat produced under better welfare conditions, and four statements regarding attitudes toward animal welfare. Differences between countries were detected for all the statements. Moreover, three clusters of consumers were identified: one with consumers indifferent towards animal welfare; one with consumers concerned about animal welfare, but they believe it is difficult to achieve; and one with consumers concerned about animal welfare, and they believe it is possible to achieve it.

scholarly journals Medial prefrontal cortex is a crucial node of a rapid learning system that retrieves recent and remote memories

2013 ◽  
Vol 103 ◽  
pp. 19-25 ◽  
Author(s):  
Carolina Gonzalez ◽  
Cecilia Kramar ◽  
Fernando Garagoli ◽  
Janine I. Rossato ◽  
Noelia Weisstaub ◽  
...  
Keyword(s):  
Prefrontal Cortex ◽  
Medial Prefrontal Cortex ◽  
Learning System ◽  
Rapid Learning

scholarly journals Dissemination and Implementation of Palliative Care in Oncology

2020 ◽  
Vol 38 (9) ◽  
pp. 995-1001 ◽  
Author(s):  
Betty R. Ferrell ◽  
Vincent Chung ◽  
Marianna Koczywas ◽  
Thomas J. Smith
Keyword(s):  
Palliative Care ◽  
Models Of Care ◽  
Dissemination And Implementation ◽  
Community Practice ◽  
Future Directions ◽  
Patients With Cancer ◽  
Effective Dissemination ◽  
Oncology Care ◽  
Cancer Trajectory ◽  
Consultation Services

Palliative care began in academic centers with specialty consultation services, and its value to patients, families, and health systems has been evident. The demand for palliative care to be integrated throughout the cancer trajectory, combined with a limited palliative care workforce, means that new models of care are needed. This review discusses evidence regarding the need for integration of palliative care into routine oncology care and describes best practices recognized for dissemination of palliative care. The available evidence suggests that palliative care be widely adopted by clinicians in all oncology settings to benefit patients with cancer and their families. Efforts are needed to adapt and integrate palliative care into community practice. Limitations of these models are discussed, as are future directions to continue implementation efforts. The benefits of palliative care can only be realized through effective dissemination of these principles of care, with more primary palliative care delivered by oncology clinicians.

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