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Crisis motivates people to track news closely, and this increased engagement can expose individuals to politically sensitive information unrelated to the initial crisis. We use the case of the COVID-19 outbreak in China to examine how crisis affects information seeking in countries that normally exert significant control over access to media. The crisis spurred censorship circumvention and access to international news and political content on websites blocked in China. Once individuals circumvented censorship, they not only received more information about the crisis itself but also accessed unrelated information that the regime has long censored. Using comparisons to democratic and other authoritarian countries also affected by early outbreaks, the findings suggest that people blocked from accessing information most of the time might disproportionately and collectively access that long-hidden information during a crisis. Evaluations resulting from this access, negative or positive for a government, might draw on both current events and censored history.

Scientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results. A total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region. Barriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.

Objective To quantify how a period of intense media coverage of controversy over the risk:benefit balance of statins affected their use.Design Interrupted time series analysis of prospectively collected electronic data from primary care.Setting Clinical Practice Research Datalink (CPRD) in the United Kingdom.Participants Patients newly eligible for or currently taking statins for primary and secondary cardiovascular disease prevention in each month in January 2011-March 2015.Main outcome measures Adjusted odds ratios for starting/stopping taking statins after the media coverage (October 2013-March 2014).Results There was no evidence that the period of high media coverage was associated with changes in statin initiation among patients with a high recorded risk score for cardiovascular disease (primary prevention) or a recent cardiovascular event (secondary prevention) (odds ratio 0.99 (95% confidence interval 0.87 to 1.13; P=0.92) and 1.04 (0.92 to 1.18; P=0.54), respectively), though there was a decrease in the overall proportion of patients with a recorded risk score. Patients already taking statins were more likely to stop taking them for both primary and secondary prevention after the high media coverage period (1.11 (1.05 to 1.18; P<0.001) and 1.12 (1.04 to 1.21; P=0.003), respectively). Stratified analyses showed that older patients and those with a longer continuous prescription were more likely to stop taking statins after the media coverage. In post hoc analyses, the increased rates of cessation were no longer observed after six months.Conclusions A period of intense public discussion over the risks:benefit balance of statins, covered widely in the media, was followed by a transient rise in the proportion of people who stopped taking statins. This research highlights the potential for widely covered health stories in the lay media to impact on healthcare related behaviour.

Objective This study was aimed to assess the perceived fear of COVID-19 and its associated factors among older adults in Bangladesh. Methods This cross-sectional study was conducted in October 2020 among 1032 older Bangladeshi adults aged ≥60 years. A semi-structured questionnaire was used to collect information on participants’ characteristics and COVID-19 related information. Perceived fear of COVID-19 was measured using the seven-item Fear of COVID-19 Scale (FCV-19S), where the cumulative score ranged from 7 to 35. Multiple linear regression was performed to identify factors associated with perceived fear of COVID-19. Results The mean fear score was 19.4. Participants who were concerned about COVID-19 ( β : 2.75, 95% CI: 1.71 to 3.78) and overwhelmed by COVID-19 ( β : 3.31, 95% CI: 2.33 to 4.29) were significantly more likely to be fearful of COVID-19. Moreover, older adults who felt themselves isolated from others and whose close friends and family members were diagnosed with COVID-19 were more fearful. However, the participants who received COVID-19 related information from the health workers had a lower level of fear ( β : -1.90, 95% CI: − 3.06 to − 0.73). Conclusions The presence of overwhelming fear of COVID-19 among the older adults of Bangladesh underlines the psychological needs of these vulnerable groups. Health workers have a key role in addressing these needs and further research is needed to identify the effective strategies for them to use.

Introduction: Open access (OA) publishing rates have risen dramatically in the biomedical sciences in the past decade. However, few studies have focused on the publishing activities and attitudes of early career researchers. The aim of this study was to examine current publishing activities of clinical and research fellows and their perceptions of OA publishing and public access.Methods: This study employed a mixed methods approach. Data on publications authored by Memorial Sloan Kettering Cancer Center fellows between 2013 and 2018 were collected via an in-house author profile system and citation indexes. Journals were categorized according to SHERPA/RoMEO classifications. In-person and telephone interviews were conducted with fifteen fellows to discern their perceptions of OA publishing.Results: The total percentage of fellows’ publications that were freely available OA was 28.6%, with a relatively flat rate between 2013 and 2018. Publications with fellows as first authors were significantly more likely to be OA. Fellows cited high article processing charges (APCs) and perceived lack of journal quality or prestige as barriers to OA publishing. Fellows generally expressed support for the National Institutes of Health (NIH) public access policy.Conclusions: While the fellows in this study acknowledged the potential of OA to aid in research dissemination, they also expressed hesitation to publish OA related to confusion surrounding legitimate OA and predatory publications and frustration with APCs. Fellows supported the NIH public access policy and accepted it as part of their research process. Health sciences information professional could potentially leverage this acceptance of public access to advocate for OA publishing. This article has been approved for the Medical Library Association’s Independent Reading Program.

In this article from India, Deepti Chavan describes the differences in health outcomes when patients are able to access the information they need. I was 16 when I first started coughing. It was in the middle of school exams. After months of coughing non-stop, I had a chest x ray and it was confirmed. \"You have TB,\" my general practitioner said. These three words changed my life. I didn't know anything about this disease. I was about to start university. Everything changed. From a young person filled with hope I became an anxious patient. References

A key component of outbreak control is monitoring public perceptions and public response. To determine public perceptions and public responses during the first 3 months of the coronavirus disease (COVID-19) outbreak in the Netherlands, we conducted 6 repeated surveys of ≈3,000 persons. Generalized estimating equations analyses revealed changes over time as well as differences between groups at low and high risk. Overall, respondents perceived the risks associated with COVID-19 to be considerable, were positive about the mitigation measures, trusted the information and the measures from authorities, and adopted protective measures. Substantial increases were observed in risk perceptions and self-reported protective behavior in the first weeks of the outbreak. Individual differences were based mainly on participants' age and health condition. We recommend that authorities constantly adjust their COVID-19 communication and mitigation strategies to fit public perceptions and public responses and that they tailor the information for different groups.

Background Individuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions. Method A mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews. Results Significantly more women (57%, n  = 373) than men (46%, n  = 80) ( X 2 (2517)  = 6.54, p  = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% ( n  = 242) of women and 69% ( n  = 54) ( ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% ( n  = 165) of women and 47% ( n  = 37) ( ns ) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; “I was never given full disclosure”: HCP silence or reticence about discussing fertility after cancer, including the sub-theme “Their primary concern is getting me cancer free”: Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer. Conclusion Discussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.

Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD. Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis. Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet. Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

There are significant health technology gaps between Latinos and non-Hispanic whites and between first- and second-generation Latinos. This study aimed to examine disparities in Web-based health information-seeking behavior (HISB) and patient portal use among Latinos, taking into account nativity and subethnic affiliation. We analyzed US-born, non-Hispanic whites and Latinos adults (N=49,259) and adult internet users (N=36,214) in the 2015 to 2016 National Health Interview Survey using a binary logistic regression controlling for individual difference level variables. Outcomes were internet use, HISB (health information-seeking online and using a chat group for health information), and patient portal use (using a computer to schedule an appointment, filling a prescription, and communicating with a provider). We found that US-born Mexicans (odds ratio [OR] 0.81, 95% CI 0.66-0.99), foreign-born Mexicans (OR 0.35, 95% CI 0.29-0.42), foreign-born Puerto Ricans (OR 0.62, 95% CI 0.44-0.87), foreign-born Central and South Americans (OR 0.42, 95% CI 0.33-0.53), and foreign-born other Latinos (OR 0.34, 95% CI 0.24-0.49) had lower odds of using the internet than US-born non-Hispanic whites. The relationship between subgroup affiliation and Web-based HISB varied by type of technology. US-born Mexicans (OR 0.77, 95% CI 0.66-0.9), foreign-born Mexicans (OR 0.51, 95% CI 0.43-0.61), foreign-born Central and South Americans (OR 0.53, 95% CI 0.43-0.64), and foreign-born other Latinos (OR 0.56, 95% CI 0.4-0.79) had lower odds of looking up health information online than US-born non-Hispanic whites. Controlling for age, sex, education, income to federal poverty level, and region, foreign-born Central and South Americans (OR 0.61, 95% CI 0.41-0.92) and foreign-born other Latinos (OR 0.26, 95% CI 0.1-0.68) had lower odds of filling a prescription using a computer than US-born non-Hispanic whites. Foreign-born Mexicans (OR 0.51, 95% CI 0.36-0.72) and foreign-born Central and South Americans (OR 0.7, 95% CI 0.5-0.99) have lower odds of emailing a health care provider than US-born non-Hispanic whites. Posthoc analyses were conducted among Mexican-Americans to see if age was significant in predicting Web-based HISB or other patient portal use. We found individuals aged 18 to 30 years had higher odds of using the internet (OR 3.46, 95% CI 2.61-4.59) and lower odds of looking up health information online (OR 0.75, 95% CI 0.58-0.96). A posthoc analysis was conducted among Mexican-Americans to see if nativity predicted Web-based HISB and patient portal use. We found that US-born individuals had higher odds (OR 52.9, 95% CI 1.2-1.93) of looking up health information online compared with foreign-born individuals. We found Latino subgroups do not use health information channels equally, and attempts to target Latinos should take ethnicity and nativity into account.