In this article we explore how the experience of searching for Online Health Information becomes a meaningful activity in the lives of older adults living with chronic health conditions. A descriptive phenomenological approach was adopted to contribute to the overall understanding of individuals’ lived experiences of OHI-seeking through an exploration of the consciousness of the experiencer. This article provides rich experiential descriptions that have the potential to make a contribution toward healthcare practice within the UK (...) by providing healthcare professionals with an understanding of patient experience that can help them identify patients’ needs and make improvements to care in terms of the quality of empathy and understanding for older adults with chronic health conditions. The findings also provide rich stories of older adults actively engaging in this form of health information seeking, data that could be used to challenge pre-conceptions that age is a barrier to using the Internet for this purpose. (shrink)

Patients increasingly share online health information with their physicians. However, few studies have investigated factors that may facilitate or inhibit such sharing and subsequent impact on physician-patient relationship. This study conducted a cross-sectional survey among 818 Chinese patients to examine if two patient characteristics -communication apprehension and eHealth literacy- influence their ways of sharing online health information with physicians and subsequently impact physician-patient relationship. The results showed that a majority of surveyed participants searched (...) class='Hi'>health information online, and about half of them used such information during their doctor visits. Less apprehensive patients tend to share the information with their physicians more directly, which can positively affect perceived physician reactions and patient satisfaction. eHealth literacy, however, is not found to be associated with patients’ sharing of online information with physicians. This study underscores the importance of identifying patient characteristic’s role in patient-physician interaction. (shrink)

The fact that Internet companies may record our personal data and track our online behavior for commercial or political purpose has emphasized aspects related to online privacy. This has also led to the development of search engines that promise no tracking and privacy. Search engines also have a major role in spreading low-quality health information such as that of anti-vaccine websites. This study investigates the relationship between search engines’ approach to privacy and the scientific quality of (...) the information they return. We analyzed the first 30 webpages returned searching “vaccines autism” in English, Spanish, Italian, and French. The results show that not only “alternative” search engines but also other commercial engines often return more anti-vaccine pages (10–53%) than Google (0%). Some localized versions of Google, however, returned more anti-vaccine webpages (up to 10%) than Google. Health information returned by search engines has an impact on public health and, specifically, in the acceptance of vaccines. The issue of information quality when seeking information for making health-related decisions also impact the ethical aspect represented by the right to an informed consent. Our study suggests that designing a search engine that is privacy savvy and avoids issues with filter bubbles that can result from user-tracking is necessary but insufficient; instead, mechanisms should be developed to test search engines from the perspective of information quality (particularly for health-related webpages) before they can be deemed trustworthy providers of public health information. (shrink)

Disease-related challenges are often associated with perceived uncertainties in individuals, triggering attempts to cope with the situation. Our study aims to understand patients’ coping strategies regarding health information-seeking behaviors (HISBs). It is guided by the Uncertainty Management Theory, and seeks to grant insights into multi-channel HISB by describing how uses of interpersonal and media channels interact to cope with uncertainties, and how trust influences the process of multi-channel HISB. Patients diagnosed with osteoarthrosis (N = 34) participated in (...) qualitative semi-structured interviews, from which five patterns of multi-channel HISB, ranging from a focus on the physician to a focus on the internet, were identified. These patterns are distinguished by underlying functions of trust – including trust serving as an additional coping strategy, and as an important influencing factor for perceiving information as meaningful – and by whether information needs remain and patients turn to multiple sources. These findings form the basis for further theory development considering the iterative nature of HISB and the role of trust. (shrink)

A self-perceived lack of training in ethical theories and related pedagogy has kept many engineering faculty members from teaching data ethics, an important aspect of engineering research that has become more salient in recent years. This paper describes the development of a module, which includes concepts, cases, policies, and best practices, to support the teaching of ethical data practice. Based on a user-oriented design approach and a moral literacy framework, the module was designed to be used in different courses and (...) co-curricular activities for students of varying levels of competence to improve their ability to identify and analyze ethical problems associated with the handling of research data. This work seeks to encourage ethical reflection on researchers’ data practice through the idea of an “ecology of data,” which highlights the co-production of data by multiple, interconnected, and heterogeneous actors. This paper also presents online and in-class evidence about the impact and limitations of the module, which is now available for interested researchers and instructors to browse and use. (shrink)

Members of the lay public are turning increasingly to the internet to answer health-related questions. Some authors suggest that the widespread availability of online health information has dislodged medical knowledge from its traditional institutional base and enabled a growing role for alternative or previously unrecognized health perspectives and ‘lay health expertise’. Others have argued, however, that the organization of information retrieved from influential search engines, particularly Google, has merely intensified mainstream perspectives because of (...) the growing consolidation of the internet with traditional, commercial media sources. In this paper we describe an analysis of ‘first page’ results retrieved through Google searches about several common health concerns, each of which has been the subject of controversy as a result of uncertain aetiology, diagnoses, outcomes and/or contested approaches to treatment. Our findings suggest that the online search tactics used by most lay health information seekers produce sources of information that, for the most part, reflect mainstream biomedical discourses, often linked to commercial interests, rather than a plurality of voices that offer a variety of perspectives and resources. We discuss the implications for health-interested internet searchers who fail to look beyond the ‘first page’. (shrink)

Online health communities have enjoyed increasing popularity in recent years, especially in the context of the COVID-19 pandemic. However, several concerns have been raised regarding the privacy of users’ personal information in OHCs. Considering that OHCs are a type of data-sharing or data-driven platform, it is crucial to determine whether users’ health information privacy concerns influence their behaviors in OHCs. Thus, by conducting a survey, this study explores the impact of users’ health information (...) privacy concerns on their engagement and payment behavior in OHCs. The empirical results show that users’ concerns about health information privacy reduce their Paid in OHCs by negatively influencing their OHC engagement. Further analysis reveals that if users have higher benefit appraisals and lower threat appraisals, the negative effect of health information privacy concerns on users’ OHC engagement will decrease. (shrink)

While the Internet has emerged as a significant resource for women negotiating the questions and circumstances that arise during conception, pregnancy and childbirth, it remains unclear what role the Internet plays in challenging the current biomedical paradigm and empowering women to make meaningful choices. This article explores how women use the Internet to manage their pregnancies and mediate their doctor–patient relationships, particularly examining the role of social class and personal health history in shaping such Internet use. Drawing from in-depth (...) interviews with white middle-class mothers, the findings show that rather than using technology to resist the dominant biomedical paradigm, most women turned to online resources that affirmed mainstream medical authority and continued to rely on their doctors. By providing the means to confirm normalcy and take control in their reproductive experiences, the Internet enables socially privileged women to more fully perform the informed patient role in order to demonstrate their competence as mothers. (shrink)

Mobile applications and socio-sexual networking websites are used by outreach workers to respond synchronously to questions and provide information, resources, and referrals on sexual health and STI/HIV prevention, testing, and care to gay, bisexual and other men who have sex with men. This exploratory study examined ethical issues identified by online outreach workers who conduct online sexual health outreach for GB2M. Semi-structured individual interviews were conducted between November 2013 and April 2014 with online providers (...) and managers to explore the benefits, challenges, and ethical implications of delivering online outreach services in Ontario, Canada. Interviews were digitally recorded and transcribed verbatim. Thematic analyses were conducted, and member-checking, analyses by multiple coders, and peer debriefing supported validity and reliability. Four themes emerged on the ethical queries of providing online sexual health outreach for GB2M: managing personal and professional boundaries with clients; disclosing personal or identifiable information to clients; maintaining client confidentiality and anonymity; and security and data storage measures of online information. Participants illustrated familiarity with potential ethical challenges, and discussed ways in which they seek to mitigate and prevent ethical conflict. Implications of this analysis for outreach workers, researchers, bioethicists, and policy-makers are to: understand ethical complexities associated with online HIV prevention and outreach for GB2M; foster dialogue to recognize and address potential ethical conflict; and identify competencies and skills to mitigate risk and promote responsive and accessible online HIV outreach. (shrink)

Millions of Americans access the Internet forhealth information, which is changing the waypatients seek information about, and oftentreat, certain medical conditions. It isestimated that there may be as many as 100,000health-related Web sites. Theavailability of so much health informationpermits consumers to assume more responsibilityfor their own health care. At the same time,it raises a number of issues that need to beaddressed. The health information available toInternet users may be inaccurate orout-of-date. Potential conflicts of interestresult (...) from the blurring of the distinctionbetween advertising and professional healthinformation. Also, potential threats to privacymay result from data mining. Health care consumers need to be able toevaluate the quality of the informationprovided on the Internet. Various evaluativemechanisms such as codes of ethics, ratingsystems, and seals of approval have beendeveloped to aid in this process. Theeffectiveness of these solutions is evaluated inthis paper. Finally, the paper addresses theimportance of including patients in developingstandardized quality assurance systems for online health information. (shrink)

In recent years, the growing academic field called “Data Science” has made many promises. On closer inspection, relatively few of these promises have come to fruition. A critique of Data Science from the phenomenological tradition can take many forms. This paper addresses the promise of “participation” in Data Science, taking inspiration from Paul Majkut’s 2000 work in Glimpse, “Empathy’s Impostor: Interactivity and Intersubjectivity,” and some insights from Heidegger’s "The Question Concerning Technology." The description of Data Science provided in the scholarly (...) literature includes “the study of the generalizable extraction of knowledge from data” (Dhar 2013, 64), “data stewardship and data sharing…access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research” (Hartter et al., 2013, 1), and “personal information, health status, daily activities and shopping preferences that are recorded and used to give us instant feedback and recommendations based on previous online behavior.” (Shin 2013) United States universities have begun to offer graduate programs in “data science”, anticipating the growth of this field for marketing, national security, and health industries. These universities include New York University, Columbia University, Stanford, Northwestern, and Syracuse. (shrink)

With the rapid development of the Internet and the normalization of COVID-19 epidemic prevention and control, Online health communities have gradually become one of the important ways for people to obtain health information, and users have to go through a series of information processing when facing the massive amount of data. Understanding the factors influencing user information processing is necessary to promote users’ health literacy, health knowledge popularization and health behavior shaping. (...) Based on the Heuristic-Systematic Model, Information Ecology Theory, Privacy Trade-Off and Self-Efficacy Theory, we constructed a model of factors influencing user information processing in online health communities. We found that information quality and emotional support had indirect effects on heuristic and systematic information processing, and these effects were mediated by privacy concerns and self-efficacy. In our research model, systematic information processing was most positively influenced directly by self-efficacy. Privacy concerns had a direct negative correlation with both dual information processing pathways. Therefore, OHCs managers should develop relevant regulations to ensure the information quality in OHCs and improve privacy protection services to promote user information processing by improving users’ self-efficacy and reducing their privacy concerns. Providing a user-friendly and interactive environment for users is also recommended to create more emotional support, thus facilitating more systematic information processing. (shrink)

The widespread use of online information resources by translation students has motivated an increasing number of researchers to investigate the relationship between online information seeking and translation performance. However, these studies mainly address the direct effect of online information seeking on translation performance, thus failing to explore and identify the internal psychological mechanisms. This study, therefore, explores the mediating role of translation self-efficacy in the relationship between online information seeking (...) and translation performance. A total of 314 translation students in China completed questionnaires on online information seeking and translation self-efficacy, and translation performance was measured by assessing the quality of a translation task given to them. Results showed that translation self-efficacy partially mediated the association between online information seeking and students’ translation performance. These findings can contribute to our understanding of the role that translation self-efficacy plays in information seeking behaviors and the emotional states of translation students in translator training. (shrink)

Protecting the privacy of individually-identifiable health data and promoting the public’s health often seem at odds. Privacy advocates consistently seek to limit the acquisition, use, and disclosure of identifiable health information in governmental and private sector settings. Their concerns relate to misuses or wrongful disclosures of sensitive health data that can lead to discrimination and stigmatization against individuals. Public health practitioners, on the other hand, seek regular, ongoing access to and use of identifiable (...) class='Hi'>health information to accomplish important public health objectives. The collection and use of identifiable health data by federal, tribal, state, and local health authorities support nearly all public health functions and goals.Identifiable health data are the lifeblood of public health practice. When aggregated, these data help authorities monitor the incidence, patterns, and trends of injury and disease in populations. Health data are acquired by public health authorities through testing, screening, and treatment programs. (shrink)

Protecting the privacy of individually-identifiable health data and promoting the public’s health often seem at odds. Privacy advocates consistently seek to limit the acquisition, use, and disclosure of identifiable health information in governmental and private sector settings. Their concerns relate to misuses or wrongful disclosures of sensitive health data that can lead to discrimination and stigmatization against individuals. Public health practitioners, on the other hand, seek regular, ongoing access to and use of identifiable (...) class='Hi'>health information to accomplish important public health objectives. The collection and use of identifiable health data by federal, tribal, state, and local health authorities support nearly all public health functions and goals.Identifiable health data are the lifeblood of public health practice. When aggregated, these data help authorities monitor the incidence, patterns, and trends of injury and disease in populations. Health data are acquired by public health authorities through testing, screening, and treatment programs. (shrink)

This study uses the Planned Risk Information Seeking Model (PRISM) to estimate the public's information seeking and avoidance intentions during the COVID-19 outbreak based on an online sample of 1031 Chinese adults and provides support for the applicability of PRISM framework in the situation of a novel high-level risk. The results indicate that information seeking is primarily directed by informational subjective norms (ISN) and perceived seeking control (PSC), while the main predictors of (...) information avoidance include ISN and attitude toward seeking. Because ISN are the strongest predictor of both information seeking and avoidance, the way the public copes with COVID-19 information may be strongly affected by individuals' social environment. Furthermore, a significant relationship between risk perception and affective risk response is identified. Our results also indicate that people who perceive greater knowledge of COVID-19 are more likely to report greater knowledge insufficiency, which results in less information avoidance. (shrink)

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is (...) to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas. (shrink)

This study investigated what information about brain death was available from Google searches for five major religions. A substantial body of supporting research examining online behaviors shows that information seekers use Google as their preferred search engine and usually limit their search to entries on the first page. For each of the five religions in this study, Google listings reveal ethical controversy about organ donation in the context of brain death. These results suggest that family members who (...) go online to find information about organ donation in the context of brain death would find information about ethical controversy in the first page of Google listings. Organ procurement agencies claim that all major world religions approve of organ donation and do not address the ethical controversy about organ donation in the context of brain death that is readily available online. (shrink)

BackgroundIn Palliative Care, family and close people are an essential part of provision of care. They assume highly complex tasks for which they are not prepared, with considerable physical, psychological, social and economic impact. Informal Caregivers often falter in the final stage of life and develop distress, enhancing emotional burden and complicated grief. The lack of available and accessible in-person counselling resources is often reported by ICs. Online resources can promote early access to help and support for patient-IC dyads (...) in palliative care. The primary aim of this research is to co-design, develop and test the feasibility of the Help2Care-PAL mHealth app that addresses the needs of ICs of palliative patients cared for at home. This Digital Health Intervention in palliative care will be used for education, symptom management, communication and decision-making, to enhance Quality of Life of patients and ICs, fostering anticipatory grief and the reach and efficiency of services.MethodsThis study will use an iterative co-design process and convergent mixed-methods design, following the MORECare consensus for developing a complex intervention. Construction of the DHI will follow four main phases: a needs assessment ; design and co-production of mHealth materials and interventions to support ICs; the development of a mHealth app; and usability and feasibility of the mHealth app. The Help2Care-PAL platform seeks to build resources from the perspectives and needs of both family dyads and nursing professionals working in the field of community palliative care. User-centeredness will be ensured by the active participation of patient-IC dyads and professionals of the palliative care community.DiscussionThis mixed-method study will offer new insights on needs and expectations of patient-IC dyads and nurses in community palliative care regarding caregiving preparedness and online health resources. Through the implementation of an adaptive digital tool, we aim to improve access to palliative care family support, which is highly linked with the wellbeing of patients and especially new ICs. (shrink)

The online healthcare community has attained rapid development in recent years in which users are facilitated to exchange disease information and seek medical treatment. However, users’ motivation of participation in OHCs is still under investigation. Taking the perspective of user perceived value, this paper examined the impacts of different incentive levels including identity incentive, privilege incentive, and material incentive on user perceived value, user engagement, and user loyalty. To test the proposed hypotheses, the study adopted the methods of (...) the between-subjects experiment and questionnaire. Based on the data analysis by ANOVA and structural equation model, the results show there are significant differences in the impacts of different incentive levels on users’ perceived value. Most of the incentive measures exert significant effects on simple user hedonic value and community identity value. Accordingly, the research findings suggest that affective support value and self-health management value demonstrate more importance for user engagement and user loyalty. Therefore, OHCs should try to improve users’ affective support value and self-health management value which are the ultimate aims of the OHCs. Our study sheds some light on profoundly understanding the design of incentive mechanism of OHC and contributes to the research of OHC services. (shrink)

Online therapy sessions and other forms of digital mental health services (DMH) have seen a sharp spike in new users since the start of the COVID-19 pandemic. Having little access to their social networks and support systems, people have had to turn to digital tools and spaces to cope with their experiences of anxiety and loss. With no clear end to the pandemic in sight, many of us are likely to remain reliant upon DMH for the foreseeable future. (...) As such, it is important to articulate some of the specific ways in which the pandemic is affecting our self and world-relation, such that we can identify how DMH services are best able to accommodate some of the newly emerging needs of their users. In this paper I will identify a specific type of loss brought about by the COVID-19 pandemic and present it as an important concept for DMH. I refer to this loss as loss of perceptual world-familiarity. Loss of perceptual world-familiarity entails a breakdown in the ongoing effortless responsiveness to our perceptual environment that characterizes much of our everyday lives. To cash this out I will turn to insights from the phenomenological tradition. Initially, my project is descriptive. I aim to bring out how loss of perceptual world-familiarity is a distinctive form of loss that is deeply pervasive yet easily overlooked-hence the relevance of explicating it for DMH purposes. But I will also venture into the space of the normative, offering some reasons for seeing perceptual world-familiarity as a component of well-being. I conclude the paper with a discussion of how loss of perceptual world-familiarity affects the therapeutic setting now that most if not all therapeutic interactions have transitioned to online spaces and I explore the potential to augment these spaces with social interaction technologies. Throughout, my discussion aims to do justice to the reality that perceptual world-familiarity is not an evenly distributed phenomenon, that factors like disability, gender and race affect its robustness, and that this ought to be reckoned with when seeking to incorporate the phenomenon into or mitigate it through DMH services. (shrink)

Consumer demand for health information and health services has rapidly evolved to capture and even propel the movement to online health information seeking. Seventeen percent of health information internet users will look for information about memory loss, dementia and Alzheimer’s disease. We examined the content of the 25 most frequently retrieved websites marketing AD dietary supplements. We found that the majority of websites and their products claimed AD-related benefits, including improvement (...) and enhancement of function, treatment for AD, prevention of AD, maintenance of function, delayed progression of AD, and decreased symptoms. Supplements were described as effective, natural, powerful or strong, dependable and pure or of high quality. Peer reviewed references to proper scientific studies were infrequent on websites. Statements highlighting the risks of dietary supplements were as common as statements mitigating or minimizing these risks. Different strategies were used to promote supplements such as popular appeals and testimonials. Further enforcement of relevant policy is needed and preparation of clinicians to deal with requests of patients and caregivers is indicated. (shrink)

Adolescents, as active online searchers, have easy access to health information. Much health information they encounter online is of poor quality and even contains potentially harmful health information. The ability to identify the quality of health messages disseminated via online technologies is needed in terms of health attitudes and behaviors. This study aims to understand how different ways of editing health-related messages affect their credibility among adolescents and what (...) impact this may have on the content or format of health information. The sample consisted of 300 secondary school students. To examine the effects of manipulating editorial elements, we used seven short messages about the health-promoting effects of different fruits and vegetables. Participants were then asked to rate the message’s trustworthiness with a single question. We calculated second-order variable sensitivity as the derivative of the trustworthiness of a fake message from the trustworthiness of a true neutral message. We also controlled for participants’ scientific reasoning, cognitive reflection, and media literacy. Adolescents were able to distinguish overtly fake health messages from true health messages. True messages with and without editorial elements were perceived as equally trustworthy, except for news with clickbait headlines, which were less trustworthy than other true messages. The results were also the same when scientific reasoning, analytical reasoning, and media literacy were considered. Adolescents should be well trained to recognize online health messages with editorial elements characteristic of low-quality content. They should also be trained on how to evaluate these messages. (shrink)

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While (...) the amount of time spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing.These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups. (shrink)

As the national awareness of health keeps deepening, online health communities have achieved rapid development. Users’ participation is critically important to the sustainable development of OHCs. Nevertheless, users usually lack the motive for participation. Based on the social capital theory, this research examines factors influencing users’ participation in OHCs. The purpose of this research is to find out decisive factors that influence users’ participation in OHCs, enrich the understanding of users’ participation in OHCs, and help OHCs address (...) the issue of sustainable development. The research model was empirically tested using 1277 responses from an online survey conducted in China. Data was analyzed using the structural equation modeling. We found informational support and emotional support to have significant direct effects over the structural capital, relational capital and cognitive capital of OHCs. Meanwhile, it is observed that relational capital and cognitive capital degree have a significant influence on knowledge acquisition and knowledge contribution of OHCs. For researchers this study provides a basis for further refinement of individual models of users’ participation. For practitioners, understanding the social capital is crucial to users’ knowledge acquisition and knowledge contribution that achieve high participation in OHCs. (shrink)

:The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, “.health,” experts advance (...) a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the.health domain. (shrink)

The COVID-19 pandemic and the quarantine undergone by children in many countries is a stressful situation about which little is known to date. Children and adolescents' behaviors to cope with home confinement may be associated with their emotional welfare. The objectives of this study were: to examine the coping strategies used out by children and adolescents during the COVID-19 health crisis, to analyze the differences in these behaviors in three countries, and to examine the relationship between different coping modalities (...) and adaptation. Participants were 1,480 parents of children aged 3–18 years from three European countries. The children's mean age was 9.15 years. Parents completed an online survey providing information on symptoms and coping behaviors observed in their children. The most frequent coping strategies were accepting what is happening, collaborating with quarantine social activities, acting as if nothing is happening, highlighting the advantages of being at home, and not appearing to be worried about what is happening. Compared to Italian and Spanish children, Portuguese children used a sense of humor more frequently when their parents talked about the situation. Acting as if nothing was happening, collaborating with social activities, and seeking comfort from others were more likely in Spanish children than in children from the other countries. Compared to Portuguese and Spanish children, Italian children did not seem worried about what was happening. Overall, an emotional-oriented coping style was directly correlated with a greater presence of anxious symptoms, as well as to mood, sleep, behavioral, and cognitive alterations. Task-oriented and avoidance-oriented styles were related to better psychological adaptation. Results also show that unaffected children or children with a lower level of impact were more likely to use strategies based on a positive focus on the situation. This study provides interesting data on the strategies to be promoted by parents to cope with the COVID-19 health crisis in children. (shrink)

BackgroundDeveloping a comprehensive, reproducible literature search is the basis for a high-quality systematic review (SR). Librarians and information professionals, as expert searchers, can improve the quality of systematic review searches, methodology, and reporting. Likewise, journal editors and authors often seek to improve the quality of published SRs and other evidence syntheses through peer review. Health sciences librarians contribute to systematic review production but little is known about their involvement in peer reviewing SR manuscripts.MethodsThis survey aimed to assess how (...) frequently librarians are asked to peer review systematic review manuscripts and to determine characteristics associated with those invited to review. The survey was distributed to a purposive sample through three health sciences information professional listservs.ResultsThere were 291 complete survey responses. Results indicated that 22% (n = 63) of respondents had been asked by journal editors to peer review systematic review or meta-analysis manuscripts. Of the 78% (n = 228) of respondents who had not already been asked, 54% (n = 122) would peer review, and 41% (n = 93) might peer review. Only 4% (n = 9) would not review a manuscript. Respondents had peer reviewed manuscripts for 38 unique journals and believed they were asked because of their professional expertise. Of respondents who had declined to peer review (32%, n = 20), the most common explanation was “not enough time” (60%, n = 12) followed by “lack of expertise” (50%, n = 10).The vast majority of respondents (95%, n = 40) had “rejected or recommended a revision of a manuscript| after peer review. They based their decision on the “search methodology” (57%, n = 36), “search write-up” (46%, n = 29), or “entire article” (54%, n = 34). Those who selected “other” (37%, n = 23) listed a variety of reasons for rejection, including problems or errors in the PRISMA flow diagram; tables of included, excluded, and ongoing studies; data extraction; reporting; and pooling methods.ConclusionsDespite being experts in conducting literature searches and supporting SR teams through the review process, few librarians have been asked to review SR manuscripts, or even just search strategies; yet many are willing to provide this service. Editors should involve experienced librarians with peer review and we suggest some strategies to consider. (shrink)

Simonet, Emanuel Nicolas Cortes The Internet has made seeking for health information easy and convenient. This information provides medical knowledge which has the potential to empower both patients and health professionals. However, It is concerning that patients may attempt to use this type of information for self-diagnostic purposes, particularly those who are unfamiliar with medical terminology. Understanding web- based information effectively is most important to enable appropriate and informed healthcare decisions. Consequently, a new (...) role for health professionals is indicated, requiring them to become familiar with the health information available on the Internet, to direct patients to reliable sources, and to assist them in understanding and interpreting web-based health information. (shrink)

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service , and (...) ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence (...) negative expectancies, and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route. (shrink)

Obtaining ‘informed consent’ from every individual participant involved in health research is a mandatory ethical practice. Informed consent is a process whereby potential participants are genuinely informed about their role, risk and rights before they are enrolled in the study. Thus, ethics committees in most countries require ‘informed consent form’ as part of an ethics application which is reviewed before granting research ethics approval. Despite a significant increase in health research activity in low-and middle-income countries in recent years, (...) only limited work has been done to address ethical concerns. Most ethics committees in LMICs lack the authority and/or the capacity to monitor research in the field. This is important since not all research, particularly in LMICs region, complies with ethical principles, sometimes this is inadvertently or due to a lack of awareness of their importance in assuring proper research governance. With several examples from Nepal, this paper reflects on the steps required to obtain informed consents and highlights some of the major challenges and barriers to seeking informed consent from research participants. At the end of this paper, we also offer some recommendations around how can we can promote and implement optimal informed consent taking process. We believe that paper is useful for researchers and members of ethical review boards in highlighting key issues around informed consent. (shrink)

Findings about the desire for health-risk information are heterogeneous and sometimes contradictory. In particular, they seem to be at variance with established psychological theories of information-seeking behavior.The present paper posits the decision about treating illness with medicine as the causal determinant for the expected net value of information, and attempts to explain idiosyncrasies in information-seeking behavior by using the notion of decision sensitivity to incoming information.Furthermore, active information avoidance is explained by (...) modeling the expected emotional distress potentially brought about by “bad news” as a disutility factor in pay-off maximization.In this context two notions of uncertainty are distinguished: an epistemic uncertainty related to the prognostic probability assigned to the risk, and an emotional uncertainty related to the expected damage. Health-risk information can both reduce epistemic and increase emotional uncertainty, giving rise to idiosyncratic processing strategies. (shrink)

In this paper I provide a critique of a set of assumptions relating to agency, choice and the legitimacy of actions impacting health that can be seen in some approaches to health promotion. After a brief discussion about the definition of health promotion, I outline two contrasting approaches to this area of health care practice. The first is focused on the provision of information and the second is concerned with seeking to change people’s preferences (...) in a particular way. It has been argued by a number of critics of health promotion that only the first approach is ethical, as it is for individuals to make their own lifestyle choices and adopt their own conception of the good life. I argue against this ‘information’ approach to health promotion on two grounds. First, I suggest that given the aims of health promotion, the provision of information is, as a matter of fact, of limited effectiveness in achieving these aims. Second, I argue that we have good reasons to question the appropriateness of respecting many of the preferences that individuals happen to have, given the origins and quality of such preferences. I then go on to argue, that by contrast we have good reasons to focus on changing at least some of the preferences that people have related to their lifestyle choices. This involves a commitment to both paternalism and a defence of a certain conception of the good life, but both can be defended. I use the example of potential responses to the growing problem of obesity to illustrate my argument, arguing that only policy that, at least sometimes, aims at preference change will be both effective and ethical. (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP (...) ME ‘Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even (...) though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities. (shrink)

Many students have experienced the death of a loved one, which increases their risk of grief and mental health problems. Formal and social support can contribute to better coping skills and personal growth in bereaved students. The purpose of this study was to examine the support that students received or wanted to receive and its relation to students’ mental health. We also looked at students’ needs when receiving support and barriers in seeking formal and social support. Participants (...) completed an online survey consisting of questions about their sociodemographic characteristics, the support they received or wanted to receive, and support needs and barriers in seeking support. The survey also included three scales assessing grief, mental health distress, and personal growth. First, we analyzed the data descriptively. Next, we used MANCOVA to examine whether students who did or did not receive or wanted more support differed in terms of their grief, mental health distress, or personal growth. About 30% of students needed more support and experienced more grief and mental health distress than students who had their support needs met. Students who received support experienced more personal growth and grief than students who did not receive support. Students indicated a need for feeling acknowledged and safe. Feeling like a burden to others and perceiving their problems as not serious enough to warrant support were common barriers to seeking support. Our results indicate that support should be provided actively to students after the death of a loved one, and support being available on an ongoing basis. (shrink)

This article attempts to explain and analyse the nature and characteristic features of a person’s privacy in the on‐line environment in order to assess how these features shape the need for protection. Since the internet has invaded our everyday lives, individual privacy is exposed in different ways in cyberspace. It is important to note that the Internet lacks the traditional characteristics of a ‘physical’ space, but the interests and inherent values protected by privacy remain the same in cyberspace. The article (...) discusses the factors that shape a different nature of online privacy compared to its off line counterpart. Online privacy may not be a novel right, but it is definitely one exposed to a whole new environment which has its own special need for protection. (shrink)

This cross sectional study was carried out among the workers of British American Tobacco Company, Dhaka with a view to explore their nutritional status, personal hygiene and health seeking behavior as because they are working on a tobacco processing company. The sample size was 179 which were selected purposively. The study showed that out of 179 respondents 89 (49.7%) were in the age groups of 30-39 years and the mean age of the respondents were 31.99 ± 6.01 years. (...) A large number of respondents (55.9%) had monthly family income of Taka 10001-20000 and the mean family income was Taka 12776.54 ± 5230.13. Maximum respondents (73.7%) were Muslim, more than half (54.2%) were shift in charge, 39.1% of the respondents consisted of 4 family members, 43.6% respondents were accustomed to other type of eating habit and 38.5% respondents knew that malnutrition was the effect of lack of proper nutrition, 59.8% of the respondents knew that night blindness was the disease due to malnutrition, most of the respondents (91.6%) performed duties to maintain health, majority (62.0%) respondents used to do nothing to maintain healthcare for their children and 35.9% visited doctor’s single time in a month, 40.2% of the respondents told regular tooth brushing as type of healthy habits. Majority (64.8%) respondents used to brush twice a day, majority (50.8%) respondents used to wash hand after toileting, majority (62.08%) respondents used to bath daily, 43.0% and 31.8% of the respondents told that dysentery and diarrhea was due to eating without proper hand washing respectively. Majority (53.6%) respondents informed that they learned about personal hygiene from television, 45.8% respondents understood that use of safe water in every work as sanitation. Majority (50.84%) came from nuclear family; most (84.92%) had exercise habit and 40.22% had education level of class VIII. Most (75.42%) of the respondents had semi pucca houses and majority (69.83%) of the respondents used only water as materials for hand washing. This study provided some important information which might help the concerned authority to take appropriate measures to improve the health status of the workers. (shrink)

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad (...) consent to data sharing in January 2016. Between February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing. The findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context. Effectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing. (shrink)

People seeking asylum are at risk of receiving poorer quality healthcare due, in part, to racist and discriminatory attitudes, behaviours and policies in the health system. Despite fleeing war and conflict; exposure to torture and traumatic events and living with uncertainty; people seeking asylum are at high‐risk of experiencing long‐term poor physical and mental health outcomes in their host country. This article aims to raise awareness and bring attention to some common issues people seeking asylum (...) face when seeking healthcare in high‐income countries where the health system is dominated by a Western biomedical view of health. Clinical case scenarios are used to highlight instances of racist healthcare policies and practices that create and maintain ongoing health disparities; limited access to culturally and linguistically appropriate health services, and lack of trauma‐informed approaches to care. Nurses and midwives can play an important role in countering racism in healthcare settings; by identifying and calling out discriminatory practice and modelling tolerance, respect and empathy in daily practice. We present recommendations for individuals, organisations and governments that can inform changes to policies and practices that will reduce racism and improve health equity for people seeking asylum. (shrink)

This report offers recommendations to physicians who provide information or services through online sites. The recommendations maintain that physicians responsible for health-related information should ensure that it is accurate, timely, reliable, and scientifically sound. Also, advice to online users with whom physicians do not have preexisting relationships or the use of decision-support programs that generate personalized information directly transmitted to users should be consistent with general and specialty-specific standards. In particular, these standards should address (...) truthfulness, protection of privacy, informed consent, and disclosures including limitations inherent in the technology. Finally, physicians who establish or are involved in health-related online sites must minimize conflicts of interest and commercial biases and, if patient specific information is transmitted, they must provide high-level security protections, as well as privacy and confidentiality safeguards. (shrink)

Generalized anxiety disorder can cause significant socioeconomic burden and daily life dysfunction; hence, therapeutic intervention through early detection is important. This study was the final stage of a 3-year anxiety screening tool development project that evaluated the psychometric properties and diagnostic screening utility of the Mental Health Screening Tool for Anxiety Disorders, which measures GAD. A total of 527 Koreans completed online and offline versions of the MHS: A, Beck Anxiety Inventory, Generalized Anxiety Disorder-7, and Penn State Worry (...) Questionnaire. The participants had an average age of 38.6 years and included 340 females. Participants were also administered the Mini-International Neuropsychiatric Interview. Internal consistency, convergent/criterion validity, item characteristics, and test information were assessed based on the item response theory, and a factor analysis and cut-off score analyses were conducted. The MHS: A had good internal consistency and good convergent validity with other anxiety scales. The two versions of the MHS: A were nearly identical. It had a one-factor structure and showed better diagnostic accuracy for GAD detection than the GAD-7 and BAI. The IRT analysis indicated that the MHS: A was most informative as a screening tool for GAD. The MHS: A can serve as a clinically useful screening tool for GAD in Korea. Furthermore, it can be administered both online and offline and can be flexibly used as a brief mental health screener, especially with the current rise in telehealth. (shrink)

Some public health behavioral intervention research studies involve deception. A methodological imperative to minimize bias can be in conflict with the ethical principle of informed consent. As a case study, we examine the specific forms of deception used in three online randomized controlled trials evaluating brief alcohol interventions. We elaborate our own decision making about the use of deception in these trials, and present our ongoing findings and uncertainties. We discuss the value of the approach of pragmatism for (...) examining these kinds of ethical issues that can arise in research on public health interventions. (shrink)

A consumer health information system must be able to comprehend both expert and non-expert medical vocabulary and to map between the two. We describe an ongoing project to create a new lexical database called Medical WordNet (MWN), consisting of medically relevant terms used by and intelligible to non-expert subjects and supplemented by a corpus of natural-language sentences that is designed to provide medically validated contexts for MWN terms. The corpus derives primarily from online health information (...) sources targeted to consumers, and involves two sub-corpora, called Medical FactNet (MFN) and Medical BeliefNet (MBN), respectively. The former consists of statements accredited as true on the basis of a rigorous process of validation, the latter of statements which non-experts believe to be true. We summarize the MWN / MFN / MBN project, and describe some of its applications. (shrink)