Biobank Participants’ Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks

2021 ◽  
pp. 155626462110552
Author(s):  
T.J. Kasperbauer ◽  
Colin Halverson ◽  
Abby Garcia ◽  
Peter H. Schwartz
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Healthcare System ◽  
Close Reading ◽  
Structured Interviews ◽  
Knowledge Test ◽  
Consent Forms ◽  
Perceived Risks ◽  
Participant Understanding

Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.

scholarly journals Mental health professionals’ perceptions on patients control of data sharing

2020 ◽  
Vol 26 (3) ◽  
pp. 2011-2029 ◽  
Author(s):  
Julia Ivanova ◽  
Adela Grando ◽  
Anita Murcko ◽  
Michael Saks ◽  
Mary Jo Whitfield ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Information ◽  
Data Sharing ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Health Data ◽  
Structured Interviews ◽  
Timely Access ◽  
The Impact

Integrated mental and physical care environments require data sharing, but little is known about health professionals’ perceptions of patient-controlled health data sharing. We describe mental health professionals’ views on patient-controlled data sharing using semi-structured interviews and a mixed-method analysis with thematic coding. Health information rights, specifically those of patients and health care professionals, emerged as a key theme. Behavioral health professionals identified patient motivations for non-sharing sensitive mental health records relating to substance use, emergency treatment, and serious mental illness (94%). We explore conflicts between professional need for timely access to health information and patient desire to withhold some data categories. Health professionals’ views on data sharing are integral to the redesign of health data sharing and informed consent. As well, they seek clarity about the impact of patient-controlled sharing on health professionals’ roles and scope of practice.

scholarly journals The role of internet resources in health decision-making: a qualitative study

2019 ◽  
Vol 5 ◽  
pp. 205520761988807
Author(s):  
Lauren Georgia Bussey ◽  
Elizabeth Sillence
Keyword(s):  
Decision Making ◽  
Health Information ◽  
Health Resources ◽  
Structured Interviews ◽  
Health Decision Making ◽  
Internet Resources ◽  
The United Kingdom ◽  
Supportive Role ◽  
Health Decision

Objective Internet resources remain important for health information and advice but their specific role in decision-making is understudied, often assumed and remains unclear. In this article, we examine the different ways in which internet resources play a role in health decision-making within the context of distributed decision-making. Methods We conducted semi-structured interviews with 37 people in the United Kingdom who reported using the internet in relation to decision-making, and representing a range of long- and short-term health conditions. The interviews focused on decision-making activities across different settings and in relation to different stakeholders to understand how internet resources play a role in these activities. We carried out a thematic analysis of the interviews. Results We identified three main ways in which internet resources played a role in health decision-making. A supportive role (as a decision crutch), a stimulating role (as a decision initiator), and an interactional role (impacting on the doctor–patient relationship). These three roles spanned different resources and illustrated how the decision-making process can be impacted by the encounters people have with technology – specifically internet based health resources – in different ways and at different time points. Conclusions Examining health decisions with respect to internet resources highlights the complex and distributed nature of decision-making alongside the complexity of online health information sourcing. We discuss the role of internet resources in relation to the increasing importance of online personal experiences and their relevance within shared decision-making.

scholarly journals Genomic Research and Data-Sharing

2020 ◽  
Vol 39 (2) ◽  
pp. 341-369
Author(s):  
Stephanie Jowett ◽  
Elizabeth Dallaston ◽  
Belinda Bennett
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Public Trust ◽  
Legal Aspects ◽  
Regulatory Framework ◽  
Genomic Research ◽  
Genomic Information

This article analyses the ethical and legal aspects of data-sharing and genomic research. It begins in Part II with an overview of the nature of genomic information, and whether it is exceptional when compared to other forms of health information. Part III considers the role of data-sharing in genomic research, with the importance of public trust in supporting genomic research considered in Part IV. The Australian regulatory framework for data-sharing in genomic research is considered in Parts V and VI, with reform options discussed in Part VII. The article concludes that advances in genomic research and the complexity of the current regulatory framework make it timely to review Australian laws to ensure that they maintain their relevance for this rapidly developing field of research.

Tertiary English-majored Students’ Perceptions toward the Role of Pronunciation in English Language Learning and their Practicing Strategies

2020 ◽  
Vol 6 (2) ◽  
pp. 264-279
Keyword(s):  
Language Learning ◽  
English Language ◽  
Vital Role ◽  
English Language Learning ◽  
Structured Interviews ◽  
Efl Learners ◽  
The University

Accurate pronunciation has a vital role in English language learning as it can help learners to avoid misunderstanding in communication. However, EFL learners in many contexts, especially at the University of Phan Thiet, still encounter many difficulties in pronouncing English correctly. Therefore, this study endeavors to explore English-majored students’ perceptions towards the role of pronunciation in English language learning and examine their pronunciation practicing strategies (PPS). It involved 155 English-majored students at the University of Phan Thiet who answered closed-ended questionnaires and 18 English-majored students who participated in semi-structured interviews. The findings revealed that students strongly believed in the important role of pronunciation in English language learning; however, they sometimes employed PPS for their pronunciation improvement. Furthermore, the results showed that participants tended to use naturalistic practicing strategies and formal practicing strategies with sounds, but they overlooked strategies such as asking for help and cooperating with peers. Such findings could contribute further to the understanding of how students perceive the role of pronunciation and their PPS use in the research’s context and other similar ones. Received 10th June 2019; Revised 12th March 2020; Accepted 12th April 2020

Patrick Kavanagh and the Authentic ‘Dispensation’: Rereading the Role of Narrator in The Great Hunger

2012 ◽  
Vol 42 (1) ◽  
pp. 86-104 ◽  
Author(s):  
Catherine Kilcoyne
Keyword(s):  
National Literature ◽  
Close Reading ◽  
Peasant Farmer ◽  
Nineteen Forties ◽  
Death Knell

This essay posits a challenge to the continued reading of The Great Hunger (1942) as a realist depiction of the Irish small-farming class in the nineteen forties. The widespread critical acceptance of the poem as a socio-historical ‘documentary’ both relies upon and propagates an outmoded notion of authenticity based upon the implicit fallacy that Kavanagh's body of work designates a quintessence of Irishness in contradistinction to his Revivalist predecessors. In 1959 Kavanagh referred to this delusion as constituting his ‘dispensation’, for indeed it did provide a poetic niche for the young poet. Kavanagh's acknowledgement of this dispensation came with his rejection of all prescriptive literary symbols. While this iconoclasm is widely recognised in his later career, the relevance of The Great Hunger to this question continues to be overlooked. In fact, this poem contains his strongest dialectic upon the use of symbols – such as the peasant farmer – in designating an authentic national literature. The close reading of The Great Hunger offered here explores the poem's central deconstruction of ruralism and authenticity. The final ‘apocalypse of clay’ is the poem's collapse under the stress of its own deconstructed symbolism; the final scream sounds the death knell to Kavanagh's adherence to his authentic dispensation.

Bad Dreams and Secret Artists: Translating Freud into Literature

2002 ◽  
Vol 4 (2) ◽  
pp. 127-139 ◽  
Author(s):  
Ian Patterson
Keyword(s):  
Sigmund Freud ◽  
Ordinary Language ◽  
Close Reading ◽  
Careful Attention ◽  
Popular Approach ◽  
English Reader ◽  
Creative Writer ◽  
The Many ◽  
The Way

This article addresses the increasingly popular approach to Freud and his work which sees him primarily as a literary writer rather than a psychologist, and takes this as the context for an examination of Joyce Crick's recent translation of The Interpretation of Dreams. It claims that translation lies at the heart of psychoanalysis, and that the many interlocking and overlapping implications of the word need to be granted a greater degree of complexity. Those who argue that Freud is really a creative writer are themselves doing a work of translation, and one which fails to pay sufficiently careful attention to the role of translation in writing itself (including the notion of repression itself as a failure to translate). Lesley Chamberlain's The Secret Artist: A Close Reading of Sigmund Freud is taken as an example of the way Freud gets translated into a novelist or an artist, and her claims for his ‘bizarre poems' are criticized. The rest of the article looks closely at Crick's new translation and its claim to be restoring Freud the stylist, an ordinary language Freud, to the English reader. The experience of reading Crick's translation is compared with that of reading Strachey's, rather to the latter's advantage.

Knowledge creation in small building and construction firms

2013 ◽  
Vol 1 (1) ◽  
pp. 125-142 ◽  
Author(s):  
Susanne Durst ◽  
Ingi Runar Edvardsson ◽  
Guido Bruns
Keyword(s):  
Construction Industry ◽  
Knowledge Creation ◽  
Vital Role ◽  
Knowledge Sources ◽  
Structured Interviews ◽  
Construction Firms ◽  
External Knowledge ◽  
Body Of Knowledge ◽  
Small Building

Studies on knowledge creation are limited in general, and there is a particular shortage of research on the topic in small and medium-sized enterprises (SMEs). Given the importance of SMEs for the economy and the vital role of knowledge creation in innovation, this situation is unsatisfactory. Accordingly, the purpose of our study is to increase our understanding of how SMEs create new knowledge. Data are obtained through semi-structured interviews with ten managing directors of German SMEs operating in the building and construction industry. The findings demonstrate the influence of external knowledge sources on knowledge creation activities. Even though the managing directors take advantage of different external knowledge sources, they seem to put an emphasis on informed knowledge sources. The study´s findings advance the limited body of knowledge regarding knowledge creation in SMEs.

Gedanken zu Genesis 46,8–27

2019 ◽  
Vol 63 (1) ◽  
pp. 93-104
Author(s):  
Wilfried Warning
Keyword(s):  
Close Reading ◽  
Per Se ◽  
Distinct Distribution

Abstract In general, commentators consider Gen 46:8–27 as a secondary addition. Close reading brings to light the structuring role of verses 18 and 25 („these were the sons of Zilpah / Bilhah … and these she bore to Jacob, sixteen souls / seven souls”). In a ten-part outline based on the personal name (PN) „Jacob” v. 18 takes the fourth and v.25 the fourth from last positions. In Genesis 37–50 the noun נפש „soul” occurs thirteen times – now v. 18 takes the sixth and v. 25 the sixth-from-last positions. The thirteen-part table based on the PN „Ruben” stands out for two reasons: Firstly, in Genesis the term „Ruben the first born of Jacob” shows up only twice, namely in the first (34,23) and last (46,8) texts. Secondly, as regards content 37,22 and 42,22 are correlated. In the 13-part outline they take the sixth and sixth-from-last positions respectively. The distinct distribution of these terms indicates that the passage per se is well structured and, what is more, at the same time it has been skillfully integrated in Gen 37–50 and in the Jacob-Joseph cycle.

Choice Matters

2018 ◽  
Author(s):  
Gordon Moore ◽  
John A. Quelch ◽  
Emily Boudreau
Keyword(s):  
Public Policy ◽  
Social Media ◽  
Healthcare Provider ◽  
Healthcare System ◽  
Consumer Choice ◽  
Marketing Management ◽  
Appropriate Use ◽  
System P ◽  
The U.S

Choice Matters: How Healthcare Consumers Make Decisions (and Why Clinicians and Managers Should Care) is a timely and thoughtful exploration of the controversial role of consumers in the U.S. healthcare system. In most markets today, consumers have more options and autonomy than ever before. Empowered consumers easily shop around for products and services that better meet their needs, and they widely share their reviews on social media to inform and influence other consumers. Businesses have responded with better experiences and prices to compete for consumers’ business. Though healthcare has lagged behind other industries in this respect, there is a rising tide of interest in consumer choice and empowerment in healthcare markets. However, most healthcare provider organizations, individual doctors, and health insurers are unprepared to consider patients as consumers. The authors draw upon the fields of medicine, marketing, management, psychology, and public policy as they take a substantive, in-depth look at consumer choice and point out its appropriate use, as well as its limitations. This book addresses perplexing issues, such as how healthcare differs from other consumer-driven markets, how consumers make healthcare decisions, and how increased consumer choice in healthcare can not only aid and empower American consumers but also improve the overall healthcare system.

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