124 research outputs found
Online Health Information Seeking in the Context of the Medical Consultation in Switzerland
No full textOnline health information seeking in the context of the medical consultation in Switzerland
No full textA growing number of patients search for medical information on the Internet. Understanding how they use the Internet is important, as this might impact their health, patient-practitioner roles, and general health care provision. In this article, we illustrate the motives of online health information seeking in the context of the doctor-patient relationship in Switzerland. We conducted semistructured interviews with patients who searched for health information online before or after a medical consultation. Findings suggest that patients searched for health information online to achieve the goals of preparing for the consultation, complementing it, validating it, and/or challenging its outcome. The initial motivations for online health information seeking are identified in the needs for acknowledgment, reduction of uncertainty, and perspective. Searching health information online was also encouraged by personal and contextual factors, that is, a person's sense of self-responsibility and the opportunity to use the Internet. Based on these results, we argue that online health information seeking is less concerned with what happens during the consultation than with what happens before or after it, in the sociocultural context
Privacy and utility of genetic testing in families with hereditary cancer syndromes living in three countries: the international cascade genetic screening experience
No full textBackground: Hereditary breast and ovarian cancer and Lynch syndrome are associated with increased lifetime risk for common cancers. Offering cascade genetic testing to cancer-free relatives of individuals with HBOC or LS is a public health intervention for cancer prevention. Yet, little is known about the utility and value of information gained from cascade testing. This paper discusses ELSI encountered during the implementation of cascade testing in three countries with national healthcare systems: Switzerland, Korea, and Israel. Methods: A workshop presented at the 5th International ELSI Congress discussed implementation of cascade testing in the three countries based on exchange of data and experiences from the international CASCADE cohort. Results: Analyses focused on models of accessing genetic services (clinic-based versus population-based screening), and models of initiating cascade testing (patient-mediated dissemination versus provider-mediated dissemination of testing results to relatives). The legal framework of each country, organization of the healthcare system, and socio-cultural norms determined the utility and value of genetic information gained from cascade testing. Conclusion: The juxtaposition of individual versus public health interests generates significant ELSI controversies associated with cascade testing, which compromise access to genetic services and the utility and value of genetic information, despite national healthcare/universal coverage. Copyright © 2023 Barnoy, Dagan, Kim, Caiata-Zufferey, Katapodi, the CASCADE and the K-CASCADE Consortia.ope
Grace S. Fong, Herself an Author : Gender, Agency, and Writing in Late Imperial China, 2008
No full textZufferey Nicolas. Grace S. Fong, Herself an Author : Gender, Agency, and Writing in Late Imperial China, 2008. In: Études chinoises, n°28, 2009. Numéro spécial sur le droit chinois. pp. 243-247
Predicting Openness of Communication in Families With Hereditary Breast and Ovarian Cancer Syndrome: Natural Language Processing Analysis
No full textBackground: In health care research, patient-reported opinions are a critical element of personalized medicine and contribute to optimal health care delivery. The importance of integrating natural language processing (NLP) methods to extract patient-reported opinions has been gradually acknowledged over the past years. One form of NLP is sentiment analysis, which extracts and analyses information by detecting feelings (thoughts, emotions, attitudes, etc) behind words. Sentiment analysis has become particularly popular following the rise of digital interactions. However, NLP and sentiment analysis in the context of intrafamilial communication for genetic cancer risk is still unexplored. Due to privacy laws, intrafamilial communication is the main avenue to inform at-risk relatives about the pathogenic variant and the possibility of increased cancer risk. Objective: The study examined the role of sentiment in predicting openness of intrafamilial communication about genetic cancer risk associated with hereditary breast and ovarian cancer (HBOC) syndrome. Methods: We used narratives derived from 53 in-depth interviews with individuals from families that harbor pathogenic variants associated with HBOC: first, to quantify openness of communication about cancer risk, and second, to examine the role of sentiment in predicting openness of communication. The interviews were conducted between 2019 and 2021 in Switzerland and South Korea using the same interview guide. We used NLP to extract and quantify textual features to construct a handcrafted lexicon about interpersonal communication of genetic testing results and cancer risk associated with HBOC. Moreover, we examined the role of sentiment in predicting openness of communication using a stepwise linear regression model. To test model accuracy, we used a split-validation set. We measured the performance of the training and testing model using area under the curve, sensitivity, specificity, and root mean square error. Results: Higher openness of communicationscores were associated with higher overall net sentiment score of the narrative, higher fear, being single, having nonacademic education, and higher informational support within the family. Our results demonstrate that NLP was highly effective in analyzing unstructured texts from individuals of different cultural and linguistic backgrounds and could also reliably predict a measure of openness of communication(area under the curve=0.72) in the context of genetic cancer risk associated with HBOC. Conclusions: Our study showed that NLP can facilitate assessment of openness of communication in individuals carrying a pathogenic variant associated with HBOC. Findings provided promising evidence that various features from narratives such as sentiment and fear are important predictors of interpersonal communication and self-disclosure in this context. Our approach is promising and can be expanded in the field of personalized medicine and technology-mediated communication. ©Vasiliki Baroutsou, Rodrigo Cerqueira Gonzalez Pena, Reka Schweighoffer, Maria Caiata-Zufferey, Sue Kim, Sharlene Hesse-Biber, Florina M Ciorba, Gerhard Lauer, Maria Katapodi, CASCADE Consortium.ope
Des données aux indices
No full textThis paper will look reflexively and retrospectively back on the discovery procedures in qualitative data analysis. Originating from a study on the management of genetic risk of breast/ovarian cancer from women with a predisposition to the disease, examples of analysis will be identified and explained as well as the reasoning that guides discovery. Five processes will be highlighted: the surprising observation, the adoption of a general principle of meaning, the formulation of hypotheses, the development of new questions in order to seek new clues, and the formulation of plausible statements. These processes are not sequential, but intermingled in a typically abductive way
Droits, devoirs et dilemmes des femmes à risque génétique de cancer
No full textFor the last fifteen years, genetic tests have been available to asymptomatic individuals for identifying cancer predisposition due to gene mutations. In case of adverse results, these individuals receive a specific and enigmatic health status, which is in-between health and illness : the genetically at-risk status. This paper aims to describe how women, who are genetically at-risk for breast and ovarian cancer, decipher rights and duties linked to their health status. This study is based on biographical interviews conducted in Switzerland with thirty-two asymptomatic women who have been aware of their gene mutation for at least three years. Results show that decoding the normative prescriptions linked to the genetically at-risk status is a complex process. Over time, women discover that they are strongly required to manage their risk by following a set of medical recommendations. In the same time, this prescription is continuously put into question. Caught between contradictory messages, at-risk women feel disoriented and are forced to activate themselves in order to build their own health project
The Abductive Art of Discovery
No full textQualitative analysis requires intuition, imagination, sensitivity, the creative linking of ideas, and a certain degree of luck. Interpreting and making sense of qualitative data have thus often been seen more as an art than a systematic activity. Because of its unstandardized character, the process of interpreting qualitative data has remained insufficiently described. This article looks retrospectively at the interpretation procedures that were used in a recent qualitative study, with the aim of identifying recurring mechanisms and basic conditions of discovery. The study was designed according to the grounded theory approach and dealt with the way unaffected women manage their genetic risk of breast and ovarian cancer. Specifically, this article offers various examples of the analytical reasoning that led to the transformation of observations into intelligible accounts. Based on these examples, the article concludes by identifying and illustrating five key moments in the process of knowledge construction: making a surprising observation, adopting a general principle of meaning, formulating hypotheses, verifying hypotheses, and constructing plausible explanations. These moments are not necessarily sequential but are instead intermingled in a typically abductive way. The complex process of discovery described may provide guidance to qualitative researchers in approaching their data and help them make their interpretative reasoning explicit, thus improving the transparency and credibility of qualitative reports.</jats:p
From data to clues. About discovery procedures in a study on the management of genetic risk of breast/ovarian cancer
No full textDroits, devoirs et dilemmes des femmes à risque génétique de cancer
No full textDepuis une quinzaine d’années, des tests permettent de vérifier la prédisposition génétique au cancer chez les individus en bonne santé. En cas de résultat positif, ceux-ci se voient octroyer un statut particulier et énigmatique, à mi-chemin entre la santé et la maladie : le statut de personne à risque génétique. Cet article vise à décrire la manière dont les femmes à risque génétique de cancer du sein et de l’ovaire déchiffrent les droits et les devoirs rattachés à leur statut. Sur la base de récits de vie recueillis en Suisse auprès de trente-deux femmes asymptomatiques qui savent porter la prédisposition génétique depuis au moins trois ans, l’article montre que décoder les prescriptions normatives associées au statut à risque génétique est un processus complexe. Au fil du temps, les femmes découvrent que ce statut s’accompagne d’une injonction forte à la gestion médicale du risque. En même temps, elles réalisent que cette injonction est sans cesse remise en question. Cette tension entre l’injonction à la gestion médicale du risque et sa remise en question est source de désorientation et oblige les femmes à s’engager pour construire elles-mêmes leur propre projet de santé.For the last fifteen years, genetic tests have been available to asymptomatic individuals for identifying cancer predisposition due to gene mutations. In case of adverse results, these individuals receive a specific and enigmatic health status, which is in-between health and illness : the genetically at-risk status. This paper aims to describe how women, who are genetically at-risk for breast and ovarian cancer, decipher rights and duties linked to their health status. This study is based on biographical interviews conducted in Switzerland with thirty-two asymptomatic women who have been aware of their gene mutation for at least three years. Results show that decoding the normative prescriptions linked to the genetically at-risk status is a complex process. Over time, women discover that they are strongly required to manage their risk by following a set of medical recommendations. In the same time, this prescription is continuously put into question. Caught between contradictory messages, at-risk women feel disoriented and are forced to activate themselves in order to build their own health project
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