Information needs in parents of long-term childhood cancer survivors.

BACKGROUND Parents' knowledge about cancer, treatment, potential late effects and necessary follow-up is important to reassure themselves and motivate their child to participate in regular follow-up. We aimed to describe (i) parents' perception of information received during and after treatment; (ii) parents' current needs for information today, and to investigate; and (iii) associations between information needs and socio-demographic and clinical characteristics. METHODS As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of survivors, diagnosed < 16 years and after 1990, and aged 11-17 years at study. We assessed parents' perception of information received and information needs, concerns about consequences of the cancer and socio-demographic information. Information on clinical data was available from the Swiss Childhood Cancer Registry. RESULTS Of 309 eligible parents, 189 responded (67%; mean time since diagnosis: 11.3 years, SD = 2.5). Parents perceived to have received verbal information (on illness: verbal 91%, written 40%; treatment: verbal 88%, written 46%; follow-up: verbal 85% written 27%; late effects: verbal 75%, written 19%). Many parents reported current information needs, especially on late effects (71%). The preferred source was written general (28%) or verbal information (25%), less favored was online information (12%). Information needs were associated with migration background (P = 0.039), greater concerns about consequences of cancer (P = 0.024) and no information received (P = 0.035). CONCLUSION Parents reported that they received mainly verbal information. However, they still needed further information especially about possible late effects. Individual long-term follow-up plans, including a treatment summary, should be provided to each survivor, preferably in written format.

Privacy Policies and Users’ Trust: Does Readability Matter?

Over the years, a drastic increase in online information disclosure spurs a wave of concerns from multiple stakeholders. Among others, users resent the “behind the closed doors” processing of their personal data by companies. Privacy policies are supposed to inform users how their personal information is handled by a website. However, several studies have shown that users rarely read privacy policies for various reasons, not least because limitedly readable policy texts are difficult to understand. Based on our online survey with over 440 responses, we examine the objective and subjective readability of privacy policies and investigate their impact on users’ trust in five big Internet services. Our findings show the stronger a user believes in having understood the privacy policy, the higher he or she trusts a web site across all companies we studied. Our results call for making readability of privacy policies more accessible to an average reader.

Online health information seeking in the context of the medical consultation in Switzerland

A 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.

Quality evaluation of the available Internet information regarding pain during orthodontic treatment

OBJECTIVE To investigate the quality of the data disseminated via the Internet regarding pain experienced by orthodontic patients. MATERIALS AND METHODS A systematic online search was performed for 'orthodontic pain' and 'braces pain' separately using five search engines. The first 25 results from each search term-engine combination were pooled for analysis. After excluding advertising sites, discussion groups, video feeds, and links to scientific articles, 25 Web pages were evaluated in terms of accuracy, readability, accessibility, usability, and reliability using recommended research methodology; reference textbook material, the Flesch Reading Ease Score; and the LIDA instrument. Author and information details were also recorded. RESULTS Overall, the results indicated a variable quality of the available informational material. Although the readability of the Web sites was generally acceptable, the individual LIDA categories were rated of medium or low quality, with average scores ranging from 16.9% to 86.2%. The orthodontic relevance of the Web sites was not accompanied by the highest assessment results, and vice versa. CONCLUSIONS The quality of the orthodontic pain information cited by Web sources appears to be highly variable. Further structural development of health information technology along with public referral to reliable sources by specialists are recommended.

The FORA Framework - A Fuzzy Grassroots Ontology for Online Reputation Management

Online reputation management deals with monitoring and influencing the online record of a person, an organization or a product. The Social Web offers increasingly simple ways to publish and disseminate personal or opinionated information, which can rapidly have a disastrous influence on the online reputation of some of the entities. The author focuses on the Social Web and possibilities of its integration with the Semantic Web as resource for a semi-automated tracking of online reputations using imprecise natural language terms. The inherent structure of natural language supports humans not only in communication but also in the perception of the world. Thereby fuzziness is a promising tool for transforming those human perceptions into computer artifacts. Through fuzzy grassroots ontologies, the Social Semantic Web becomes more naturally and thus can streamline online reputation management. For readers interested in the cross-over field of computer science, information systems, and social sciences, this book is an ideal source for becoming acquainted with the evolving field of fuzzy online reputation management in the Social Semantic Web area. ​

The FORA Framework - A Fuzzy Grassroots Ontology for Online Reputation Management

Online reputation management deals with monitoring and influencing the online record of a person, an organization or a product. The Social Web offers increasingly simple ways to publish and disseminate personal or opinionated information, which can rapidly have a disastrous influence on the online reputation of some of the entities. This dissertation can be split into three parts: In the first part, possible fuzzy clustering applications for the Social Semantic Web are investigated. The second part explores promising Social Semantic Web elements for organizational applications,while in the third part the former two parts are brought together and a fuzzy online reputation analysis framework is introduced and evaluated. Theentire PhD thesis is based on literature reviews as well as on argumentative-deductive analyses.The possible applications of Social Semantic Web elements within organizations have been researched using a scenario and an additional case study together with two ancillary case studies—based on qualitative interviews. For the conception and implementation of the online reputation analysis application, a conceptual framework was developed. Employing test installations and prototyping, the essential parts of the framework have been implemented.By following a design sciences research approach, this PhD has created two artifacts: a frameworkand a prototype as proof of concept. Bothartifactshinge on twocoreelements: a (cluster analysis-based) translation of tags used in the Social Web to a computer-understandable fuzzy grassroots ontology for the Semantic Web, and a (Topic Maps-based) knowledge representation system, which facilitates a natural interaction with the fuzzy grassroots ontology. This is beneficial to the identification of unknown but essential Web data that could not be realized through conventional online reputation analysis. Theinherent structure of natural language supports humans not only in communication but also in the perception of the world. Fuzziness is a promising tool for transforming those human perceptions intocomputer artifacts. Through fuzzy grassroots ontologies, the Social Semantic Web becomes more naturally and thus can streamline online reputation management.

Fuzzy Online Reputation Analysis Framework

The fuzzy online reputation analysis framework, or “foRa” (plural of forum, the Latin word for marketplace) framework, is a method for searching the Social Web to find meaningful information about reputation. Based on an automatic, fuzzy-built ontology, this framework queries the social marketplaces of the Web for reputation, combines the retrieved results, and generates navigable Topic Maps. Using these interactive maps, communications operatives can zero in on precisely what they are looking for and discover unforeseen relationships between topics and tags. Thus, using this framework, it is possible to scan the Social Web for a name, product, brand, or combination thereof and determine query-related topic classes with related terms and thus identify hidden sources. This chapter also briefly describes the youReputation prototype (www.youreputation.org), a free web-based application for reputation analysis. In the course of this, a small example will explain the benefits of the prototype.

Gender and language in online job advertisements - a cross-cultural study

The aim of this project is to investigate the use of gender-fair language from a cross-linguistic perspective. Specifically, we are interested in whether the use of gender-fair language correlates with socio-economic rankings of gender equality and with structural features of a language. We decided to analyze online job advertisements, as they reflect common language use and can easily be compared across languages. Moreover, formulations in job advertisements have been shown to impact personnel selection via the way target groups are addressed and referred to. In the present study we examined to what extent job advertisements are formulated in a gender-fair way and how this correlates with factors such as language, culture as well as status and gender-typicality of the job advertised. The data consisted of job advertisements published online in four European countries which occupy different positions in socio-economic rankings of gender equality (World Economic Forum, 2011): Switzerland (10), Austria (rank 34), Poland (42), and Czech Republic (75). We randomly selected 100 job advertisements from four lines of business characterized by different proportions of female employees – steels/metals, science, restaurants/food services, and health care. The advertisements were analyzed with regard to the linguistic form of the job title and the remaining text; we also noted indicators of job status, reference to gender-typical traits, pictures of women/men and other information which might be relevant to the use of gender-fair language (e.g., equal opportunity policies). A first analysis of the data indicates that the phrasing of job titles is closely related to the gender-typicality of a profession. While mainly gender-fair forms are used in healthcare, masculine forms are used more often in the domain of steels and metals. Feminine forms only, however, are almost never used. Cultural differences as well as correlations with associated variables will be discussed.

Online social networks: why we disclose

On online social networks such as Facebook, massive self-disclosure by users has attracted the attention of industry players and policymakers worldwide. Despite the impressive scope of this phenomenon, very little is understood about what motivates users to disclose personal information. Integrating focus group results into a theoretical privacy calculus framework, we develop and empirically test a Structural Equation Model of self-disclosure with 259 subjects. We find that users are primarily motivated to disclose information because of the convenience of maintaining and developing relationships and platform enjoyment. Countervailing these benefits, privacy risks represent a critical barrier to information disclosure. However, users’ perception of risk can be mitigated by their trust in the network provider and availability of control options. Based on these findings, we offer recommendations for network providers.

Privacy concerns and identity in online social networks

Driven by privacy-related fears, users of Online Social Networks may start to reduce their network activities. This trend can have a negative impact on network sustainability and its business value. Nevertheless, very little is understood about the privacy-related concerns of users and the impact of those concerns on identity performance. To close this gap, we take a systematic view of user privacy concerns on such platforms. Based on insights from focus groups and an empirical study with 210 subjects, we find that (i) Organizational Threats and (ii) Social Threats stemming from the user environment constitute two underlying dimensions of the construct “Privacy Concerns in Online Social Networks”. Using a Structural Equation Model, we examine the impact of the identified dimensions of concern on the Amount, Honesty, and Conscious Control of individual self-disclosure on these sites. We find that users tend to reduce the Amount of information disclosed as a response to their concerns regarding Organizational Threats. Additionally, users become more conscious about the information they reveal as a result of Social Threats. Network providers may want to develop specific mechanisms to alleviate identified user concerns and thereby ensure network sustainability.

The German business and information technologies project

The Business and Information Technologies (BIT) project strives to reveal new insights into how modern IT impacts organizational structures and business practices using empirical methods. Due to its international scope, it allows for inter-country comparison of empirical results. Germany — represented by the European School of Management and Technologies (ESMT) and the Institute of Information Systems at Humboldt-Universität zu Berlin — joined the BIT project in 2006. This report presents the result of the first survey conducted in Germany during November–December 2006. The key results are as follows: • The most widely adopted technologies and systems in Germany are websites, wireless hardware and software, groupware/productivity tools, and enterprise resource planning (ERP) systems. The biggest potential for growth exists for collaboration and portal tools, content management systems, business process modelling, and business intelligence applications. A number of technological solutions have not yet been adopted by many organizations but also bear some potential, in particular identity management solutions, Radio Frequency Identification (RFID), biometrics, and third-party authentication and verification. • IT security remains on the top of the agenda for most enterprises: budget spending was increasing in the last 3 years. • The workplace and work requirements are changing. IT is used to monitor employees' performance in Germany, but less heavily compared to the United States (Karmarkar and Mangal, 2007).1 The demand for IT skills is increasing at all corporate levels. Executives are asking for more and better structured information and this, in turn, triggers the appearance of new decision-making tools and online technologies on the market. • The internal organization of companies in Germany is underway: organizations are becoming flatter, even though the trend is not as pronounced as in the United States (Karmarkar and Mangal, 2007), and the geographical scope of their operations is increasing. Modern IT plays an important role in enabling this development, e.g. telecommuting, teleconferencing, and other web-based collaboration formats are becoming increasingly popular in the corporate context. • The degree to which outsourcing is being pursued is quite limited with little change expected. IT services, payroll, and market research are the most widely outsourced business functions. This corresponds to the results from other countries. • Up to now, the adoption of e-business technologies has had a rather limited effect on marketing functions. Companies tend to extract synergies from traditional printed media and on-line advertising. • The adoption of e-business has not had a major impact on marketing capabilities and strategy yet. Traditional methods of customer segmentation are still dominating. The corporate identity of most organizations does not change significantly when going online. • Online sales channel are mainly viewed as a complement to the traditional distribution means. • Technology adoption has caused production and organizational costs to decrease. However, the costs of technology acquisition and maintenance as well as consultancy and internal communication costs have increased.

Online privacy concerns and legal assurance: a user perspective

Since the emergence of the Internet and Social Media, privacy concerns and need for regulation in this area have been a frequent subject on the agenda of numerous stakeholders and policy-makers worldwide. Contributing to this debate, this paper builds on the responses of 553 Internet users to uncover users’ current privacy concerns and their attitudes towards legal assurances in this context. Our findings suggest that users have a complex attitude towards these issues. While they express strong concerns about privacy when asked directly, they often have difficulties formulating the exact nature of these concerns. In the Facebook context, Facebook itself is often mentioned as the primary source of threat, closely followed by marketing organizations. Users feel ill-protected by existing legal framework, especially when using Social Networking Sites. Reasons include common beliefs that the law is unable to address complexities of the Internet; local character of laws; possibilities to disregard the law, particularly since enforcement is difficult. Overall, positive changes in legal framework are desirable, with many respondents willing to pay more in taxes to ensure progress in this area.

Online disclosure and privacy concerns: a study of Moroccan and American facebook users

In using online social networks to connect and interact with people has become extremely popular all around the world. Thelargest Social Networking Site (SNS), Facebook, offers its services in over 70 languages and increasingly relies oninternational users to grow its membership. Aiming to understand the role of culture in SNS participation, this study adopts a‘privacy calculus’ perspective to examine the differences in participation patterns between American and MoroccanFacebook users. Survey results show that Moroccans users disclose less on Facebook than US users, yet perceive moredamage should their privacy on Facebook be violated. American users, on the other hand, have lower privacy concerns, trustfellow SNS members and legal system more, and disclose more in their profile. From a practical standpoint, the resultsindicate that SNS providers cannot rely on the same methods to encourage user participation and disclosure in differentcountries.

Leveraging Trust and Privacy Concerns in Online Social Networks: an Empirical Study

Unprecedented success of Online Social Networks, such as Facebook, has been recently overshadowed by the privacy risks they imply. Weary of privacy concerns and unable to construct their identity in the desired way, users may restrict or even terminate their platform activities. Even though this means a considerable business risk for these platforms, so far there have been no studies on how to enable social network providers to address these problems. This study fills this gap by adopting a fairness perspective to analyze related measures at the disposal of the provider. In a Structural Equation Model with 237 subjects we find that ensuring interactional and procedural justice are two important strategies to support user participation on the platform.