Social and Cultural Factors, Self-efficacy, and Health in Latino Cancer Caregivers.

BACKGROUND: Latino cancer caregivers are at risk of physical, mental, and emotional health issues. Sociocultural factors such as informational support, Anglo orientation, and spiritual practice may compound or protect against these risks. OBJECTIVE: The purpose of this research project was to examine self-efficacy as a mediator between sociocultural factors and health outcomes in Latino cancer caregivers. METHODS: This is a secondary analysis of baseline caregiver data from an experimental study testing two psychoeducational interventions in Latina individuals with breast cancer and their caregivers. Caregivers (N = 233) completed items assessing self-efficacy, informational support, Anglo orientation, spiritual practice, depression, and global health. Caregiver data were analyzed using hierarchical linear regression and mediation analysis. RESULTS: Spiritual well-being was not significantly associated with health outcomes or self-efficacy. In regression analysis, both informational support ( b = 0.32; 95% confidence interval [CI], 0.20 to 0.45; P < .001) and Anglo orientation ( b = 0.15; 95% CI, 0.11 to 2.48; P < .05) were significant predictors of global health, but informational support ( b = -0.43; 95% CI, -0.55 to -0.30; P < .001) was the only significant predictor of depression. There were indirect relationships through self-efficacy for symptom management for both informational support and Anglo orientation and health outcomes. CONCLUSIONS: Informational support and Anglo orientation were significantly related to health outcomes directly and indirectly through self-efficacy in Latino cancer caregivers. IMPLICATIONS FOR PRACTICE: Informational support through the health system and community, when provided with attention to culture and Spanish language translation, can increase Latino cancer caregivers' self-efficacy to care for themselves and improve health outcomes.

Open science and public trust in science: Results from two studies.

In two studies, we examined whether open science practices, such as making materials, data, and code of a study openly accessible, positively affect public trust in science. Furthermore, we investigated whether the potential trust-damaging effects of research being funded privately (e.g. by a commercial enterprise) may be buffered by such practices. After preregistering six hypotheses, we conducted a survey study (Study 1; N = 504) and an experimental study (Study 2; N = 588) in two German general population samples. In both studies, we found evidence for the positive effects of open science practices on trust, though it should be noted that in Study 2, results were more inconsistent. We did not however find evidence for the aforementioned buffering effect. We conclude that while open science practices may contribute to increasing trust in science, the importance of making use of open science practices visible should not be underestimated.

It is time for open access in clinical care.

A healthcare center widely sharing its internal guidelines on how to treat COVID-19 patients "just wasn't done." As the pandemic raged at a Boston hospital, the next generation of clinical leaders pushed for change.

COVID-19 increased censorship circumvention and access to sensitive topics in China.

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.

Exploring fear of COVID-19 and its correlates among older adults in Bangladesh.

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 (ß: 2.75, 95% CI: 1.71 to 3.78) and overwhelmed by COVID-19 (ß: 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 (ß: -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.

Dynamic Public Perceptions of the Coronavirus Disease Crisis, the Netherlands, 2020.

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.

[Is COVID-19 a hype?] / Is covid-19 een hype?

The answer to the question whether COVID-19 is a hype or not depends on how we define a hype. The article loosely builds on philosophical discussions about hypes in knowledge work and information sciences. The central idea is to make clear that hypes always imply a certain overload of information and that the paradoxical outcome of this that it is not just information that is piling up but also disinformation. It is argued that it is in this sense (and only in this sense) that COVID-19 is a hype. How we respond to this hype depends very strongly on subjective sensitivities towards both information and desinformation.

Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

OBJECTIVES: The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing). METHODS: After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined. RESULTS: Parents of children with FXS or ASD had relatively higher preferences for research conducted by nonprofits than parents of typically developing children. Parents of children with ASD also preferred research using non-identifiable and nonsensitive information. Parents of children with FXS or ASD also had preferences for research that was personally important and returned either summary or individual results. Although a few child and family characteristics were related to preferences, they did not overall define the subgroups of parents. CONCLUSIONS: Although electronic health record preference research has been conducted with the general public, this is the first study to examine the opinions of parents who have a child with a known or suspected genetic condition. These parents were open to studies using their child's electronic health record because they may have more to gain from this type of research.

Attitudes and acceptance of patients undergoing visceral surgery towards an open access electronic medical record - a Swiss-German single-centre study.

INTRODUCTION: With the digitalisation of patient medical records, providing patients with free access to their electronic medical record (EMR) has become an important topic of debate in many countries. Recent studies show that the quality of treatment in healthcare may be improved by encouraging patients to take an active part in their care. Providing patients with access to their EMR may also improve the patient-doctor relationship, adherence to treatment and patient satisfaction. In June 2015, the Swiss government passed a law to set the framework for a nationally coordinated EMR system. A major stipulation to this legislation is that patients and doctors must consent to having an open access EMR (oEMR). The aim of this study was to assess patients' attitudes towards an oEMR. METHODS: Consecutive patients attending the outpatient clinic of our department within two months were included in this study. Patients were asked to complete a questionnaire consisting of 43 items, including amongst others disease characteristics, their expectations regarding an oEMR and its implementation. This study was approved by the ethics committee of the Canton Zurich (BASEC-Nr. Req-2016-00383). RESULTS: 149 patients were included with a mean age of 52 (standard deviation 17) years. 42% suffered from abdominal diseases (benign or malignant), 26% from hernias, and 17% from anorectal disorders. 76% of the responding patients fully supported an oEMR. Among all items, a higher educational degree (odds ratio [OR] 55, 95% confidence interval [CI] 39-70), patients with general or half-private insurance (OR 10, 95% CI 0.99-100) and patients with suspected cancer (OR 6, 95% CI 0.93-42) were independent predictors for a positive attitude regarding an oEMR on multivariate analysis. CONCLUSION: To our knowledge, this is the first study conducted in a hospital in the German-speaking part of Switzerland evaluating patients' opinions regarding an oEMR. Overall a large majority of the patients support an oEMR. Patients with cancer, a higher educational degree and general or half-private insured patients were more likely to support an oEMR. An important next step would be to conduct studies investigating opinions of medical professionals during the implementation of an oEMR.

Dimensions of women's empowerment on access to skilled delivery services in Nepal.

BACKGROUND: Each day, approximately 810 women die during pregnancy and childbirth and 94% of the deaths take place in low and middle income countries. Only 45% of the births in South Asia are attended by skilled professionals, which is lower than that in other Asian regions. Antenatal and postnatal care received from skilled providers can help prevent maternal and neonatal mortality by identifying pregnancy-related complications. Women's empowerment is considered to be a significant determinant of maternal health care outcomes; however, studies on the contextual influences of different dimensions of empowerment in Nepal are relatively limited. Therefore, this study analyzed nationwide survey data to examine the influence of women's economic empowerment, sociocultural empowerment, familial/interpersonal empowerment and media and information technology empowerment on accessing skilled delivery services among the married women in Nepal. METHODS: This study examined the influence of women's empowerment on skilled delivery services among married women (n = 4400) aged 15-49 years using data from the 2016 Nepal Demographic and Health Survey. Descriptive analysis and binary logistic regression analysis were employed to analyze the data. RESULTS: Significant associations were found between women's media and information technology empowerment, economic empowerment and sociocultural empowerment and access to skilled birth attendants. Specifically, the education of women, their occupation, owning a bank account, media exposure, and internet use were significantly associated with the use of skilled birth attendants. CONCLUSION: Focusing on women's access to media and information technology, economic enhancement and education may increase the use of skilled birth attendants in Nepal.

[Survey on the Pharmacists Perceptions of Clinical Trial Literature Accessibility].

The purpose of this study is to understand the reading habits of Japanese pharmacists regarding clinical trial literature in 2014. Questionnaires were mailed to 1997 pharmacists in Miyagi Prefecture. Six hundreds and five [342 (56.5%) hospital pharmacists and 254 (42.0%) community pharmacists] responded to questionnaires (Response rate: 30.3%). Regarding the question, "Do you habitually read clinical trial literature?", 19.5% of hospital and 8.3% community pharmacists responded "yes", respectively, which showed both pharmacists are not habitual readers of clinical trial literature. That would be because they did not study critical reading of clinical trial literature at pharmacy schools as well as their work environments to access and retrieve clinical trial literature were limited.

The impact of COVID-19 on the cancer care of adolescents and young adults and their well-being: Results from an online survey conducted in the early stages of the pandemic.

BACKGROUND: Because of the global spread of coronavirus disease 2019 (COVID-19), oncology departments across the world have rapidly adapted their cancer care protocols to balance the risk of delaying cancer treatments and the risk of COVID-19 exposure. COVID-19 and associated changes may have an impact on the psychosocial functioning of patients with cancer and survivors. This study was designed to determine the impact of the COVID-19 pandemic on young people living with and beyond cancer. METHODS: In this cross-sectional study, 177 individuals, aged 18 to 39 years, were surveyed about the impact of COVID-19 on their cancer care and psychological well-being. Participants also reported their information needs with respect to COVID-19. Responses were summarized with a content analysis approach. RESULTS: This was the first study to examine the psychological functioning of young patients and survivors during the first weeks of the COVID-19 pandemic. A third of the respondents reported increased levels of psychological distress, and as many as 60% reported feeling more anxious than they did before COVID-19. More than half also wanted more information tailored to them as young patients with cancer. CONCLUSIONS: The COVID-19 pandemic is rapidly evolving and changing the landscape of cancer care. Young people living with cancer are a unique population and might be more vulnerable during this time in comparison with their healthy peers. There is a need to screen for psychological distress and attend to young people whose cancer care has been delayed. As the lockdown begins to ease, the guidelines about cancer care should be updated according to this population's needs.

The Use of the Internet and Social Media by Individuals with Ménière's Disease: An Exploratory Survey of Finnish Ménière Federation Members.

OBJECTIVES: The present study explored the use of the Internet and social media by individuals with Ménière's disease (MD). MATERIALS AND METHODS: This study utilized a retrospective design and included the data of 465 individuals with MD from the Finnish Ménière Federation (FMF) database. Moreover, the participants included 346 females (i.e., approximately 75% of the sample), with roughly 95% of which middle-aged or older adults. An Internet-based survey was used to collect the demographic information and determine the use of the Internet and social media by individuals with MD in order to establish a computer-based peer support program. RESULTS: Based on the findings, more than 90% of the respondents reported using the Internet, 70% used the Internet to gather information about MD, and 47% stated that they trusted the information on the Internet. CONCLUSION: The Internet and social media are frequently used by individuals with MD to gather information about their health conditions. Therefore, it is essential to ensure that appropriate and accurate information is available via Internet websites and social media platforms.

Clinical information seeking behavior of physicians: A systematic review.

INTRODUCTION: Physicians encounter a large number of questions during patient care. Therefore, finding high-quality evidence provides a good opportunity to improve patient care and continue learning. OBJECTIVES: The present study aims to obtain a comprehensive understanding of the physicians' clinical information-seeking behavior. METHODS: A systematic review was conducted according to the PRISMA guidelines. The Web of Science, PubMed, Scopus, ProQuest, Emerald, Wiley Online Library, Science Direct, Cochrane Library, and Embase databases were systematically searched based on the defined criteria. The inclusion criteria were the original articles in the context of patient care and full-text articles published in English from 2002 to 2017. The articles were reviewed, selected, and analyzed in group discussions. RESULTS: Seventy-three articles met the study criteria. Therapy, diagnosis, and epidemiology ranked the highest ones among physicians' information needs. The mean frequency of questions raised during patient care was varied from 0.18 to 1.5 per patient, and the percentage of questions answered ranged between 22.8 and 93 %. The time taken to find the answers to the questions was between 2 to 32 min. Consultation with colleagues, alongside reviewing journal articles, Internet websites, textbooks, and MEDLINE/PubMed were the most frequently used sources reported in the retrieved articles. Further, common search strategies used by physicians included keywords, Boolean operators, similar medical terms, and advanced search. In addition, lack of time, and information searching skills and the unawareness of accessible sources were the most frequent barriers while easily searching and finding information and summaries and synthesized evidence-based materials mainly facilitated information seeking. CONCLUSIONS: Physicians increasingly encounter clinical point-of-care questions. However, the facilitation of accessing online information sources has not enabled the physicians to find answers to many of their questions. Considering the fact that they often refer to colleagues, Internet websites, and databases to find answers, the quality of information should be improved by evaluating the physicians' information-seeking behavior in the first stage, and developing information technology in a point-of-care environment, integrating EHR systems to communicate with colleagues, and accessing databases in the second stage.

Bronchiectasis Information and Education: a randomised, controlled feasibility trial.

BACKGROUND: There has been comparatively little patient information about bronchiectasis, a chronic lung disease with rising prevalence. Patients want more information, which could improve their understanding and self-management. A novel information resource meeting identified needs has been co-developed in prior work. We sought to establish the feasibility of conducting a multi-centre randomised controlled trial to determine effect of the information resource on understanding, self-management and health outcomes. METHODS/DESIGN: We conducted an unblinded, single-centre, randomised controlled feasibility trial with two parallel groups (1:1 ratio), comparing a novel patient information resource with usual care in adults with bronchiectasis. Integrated qualitative methods allowed further evaluation of the intervention and trial process. The setting was two teaching hospitals in North East England. Participants randomised to the intervention group received the information resource (website and booklet) and instructions on its use. Feasibility outcome measures included willingness to enter the trial, in addition to recruitment and retention rates. Secondary outcome measures (resource use and satisfaction, quality of life, unscheduled healthcare presentations, exacerbation frequency, bronchiectasis knowledge and lung function) were recorded at baseline, 2 weeks and 12 weeks. RESULTS: Sixty-two participants were randomised (control group = 30; intervention group = 32). Thirty-eight (61%) were female, and the participants' median age was 65 years (range 15-81). Median forced expiratory volume in 1 s percent predicted was 68% (range 10-120). Sixty-two of 124 (50%; 95% CI, 41-59%) of potentially eligible participants approached were recruited. Sixty (97%) of 62 participants completed the study (control group, 29 of 30 [97%]; 95% CI, 83-99%; 1 unrelated death; intervention group, 31 [97%] of 32; 95% CI, 84-99%; 1 withdrawal). In the intervention group, 27 (84%) of 32 reported using the information provided, and 25 (93%) of 27 of users found it useful, particularly the video content. Qualitative data analysis revealed acceptability of the trial and intervention. Web analytics recorded over 20,000 page views during the 16-month study period. CONCLUSION: The successful recruitment process, high retention rate and study form completion rates indicate that it appears feasible to conduct a full trial based on this study design. Worldwide demand for online access to the information resource was high. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN84229105. Registered on 25 July 2014.

Publishing habits and perceptions of open access publishing and public access amongst clinical and research fellows.

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 professionals could potentially leverage this acceptance of public access to advocate for OA publishing.

Access to Personal Health Records and Screening for Breast and Cervical Cancer Among Women with a Family History of Cancer.

It is essential for at-risk women to be screened for breast and cervical cancer in a timely manner. Despite a growing interest in the role of health information technology including personal health records (PHRs) to improve quality and outcomes in health care, less is known about the effectiveness of PHRs to promote breast and cervical cancer screening among women with a family history of cancer (FHC). We examined the association between access to PHRs and the use of a recommended mammography and a Pap smear testing among women with a FHC using data from the 2015 Health Information National Trends Survey (HINTS 4-cycle 4) and the 2016 Area Health Resource Files. The study sample was comprised of 1250 women aged 20-75 years with a FHC, a subsample of 3677 survey respondents. Of the 1250 women, 64.96% received a mammogram, and 75.44% underwent a Pap testing. Among women with a FHC, there was a significant and positive association between access to PHRs and the receipt of a mammogram (adjusted odds ratio (aOR) 4.20; 95% CI, 2.23-7.94; p < .001) and a Pap testing (aOR 3.13; 95% CI, 1.56-6.28; p < .01). Our findings suggest that at-risk women can benefit from greater access to PHRs. Policymakers should consider incentivizing providers and healthcare organizations who provide access to PHRs to their patients as well as developing programs that can help improve access to PHRs among at-risk women.

Governing Commercial Access to Health Data for Public Benefit: Charity Law Solutions.

There is a growing body of evidence that supports the view that research participants and the public are concerned about commercial access to health data. Evidence also suggests that attitudes are ameliorated when charity organisations are involved and where research promises to deliver 'public benefit'. To a significant extent, therefore, mechanisms that ensure the public benefit are key to sustaining public and participant support for research access to health data. As a regime founded on the concept of public benefit, charity law provides regulatory and governance mechanisms through which the public benefit of a charity is protected and promoted. This article examines the merits of charity law mechanisms and analyses their significance for governance of commercial access to health data for public benefit, using UK Biobank Ltd, a charitable company limited by guarantee, as an example. The article critically analyses three charity law mechanisms that operate to ensure that an organization providing access to data meets its public benefit requirements: charitable purposes; members' and directors' powers and duties; and accountability via the oversight powers of the Charity Commission and charity proceedings in court. The article concludes that there is potential for the charity model to be the benchmark for governing commercial access to health data for public benefit research, but notes the limitations of the model and recommends the appointment of independent data governance committees to further bolster the charity law framework.