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Population aging is a major concern worldwide. Active aging should be promoted by increasing the social participation of older adults and enabling them to remain involved in the community. Research has demonstrated the utility of digital resources for addressing the needs of older adults, which include networking, entertaining, and seeking health-related information. However, the digital divide among older adults (i.e., the "gray digital divide") is increasingly being recognized as a social problem that may be related to poor well-being. To obtain updated local data on the prevalence of Internet access and usage and their relationship with perceived well-being, we conducted telephone interviews with a random sample of 1018 older adults in Hong Kong from January to July 2021 (This research has received funding support from the Interdisciplinary Research Matching Scheme, Hong Kong Baptist University). We found that only 76.5% of the participants had Internet access at home, a mobile phone data plan, or both, whereas 36.3% had never used Internet services and 18.2% had no digital devices. A younger age, male gender, higher education level, living with others, and higher self-perceived social class were associated with material access to digital devices and everyday use of Internet services. Participants who accessed the Internet every day had higher levels of life satisfaction and self-rated physical and mental health than those who rarely or never used the Internet. Hierarchical multiple regression analysis revealed that digital skills were significantly associated with self-rated mental health even when controlling for demographic variables (including age, gender, education level, and self-perceived social class). This study contributes to the limited body of literature on the relationship between Internet use, digital skills, and perceived well-being. Our findings highlight the importance of addressing the digital divide even in cities with high penetration of information and communication technology, such as Hong Kong. We also discuss our insights into the use of timely interventions for older adults to address the gray digital divide.

Background People with intellectual disabilities are over-represented in the criminal justice system. The United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD) enshrines a right to equal access to justice for persons with disabilities (Article 13, UNCRPD). Accessible information is a key aspect of exercising this right. Yet, many jurisdictions, including Ireland, are yet to develop accessible information for disabled people who may be arrested. Aims This paper describes the collaborative development through multidisciplinary and advocate consensus of an accessible (Easy -to- Read) Notice of Rights (ERNR) for people with intellectual disabilities in police custody in Ireland. Methods Guidelines developed by Ireland's representative organisation for people with intellectual disabilities and examples of international practice were used to develop a draft ERNR by the primary researcher in partnership with an expert from a representative organisation for people with intellectual disabilities. The ERNR was developed thereafter through two focus groups with a view to achieving consensus with a focus on accessibility, accuracy and layout. This included a multidisciplinary focus group with participants from a representative organisation for people with intellectual disabilities, psychology, speech and language therapy, the police force, public health, forensic psychiatry, mental health, law and, subsequently, a focus group of people with lived experience of intellectual disability. Results Progressive development of the ERNR resulted in incremental improvements in textual accuracy as well as the inclusion of more accessible language and imagery. Originality/value This is the first attempt at developing an easy-to-read document relating to the legal rights of suspects in police custody in Ireland and, accordingly, this procedural innovation promises to assist, not just persons with intellectual disabilities, but also those with limited literacy at the point of arrest. The methodology used in the preparation of the document, employing a focus group to achieve consensus with participation from both multiple disciplines and persons with an intellectual disability, is in harmony with the ethos of the UNCPRD. This methodology may usefully be employed by other member states that have ratified the Convention but have yet to develop accessible version of the legal rights and entitlements that extend to arrested persons under their domestic law., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Secrecy, privacy, confidentiality, concealment, disclosure, and gossip all involve sharing and withholding access to information. However, existing theories do not account for the fundamental similarity between these concepts. Accordingly, it is unclear when sharing and withholding access to information will have positive or negative effects and why these effects might occur. We argue that these problems can be addressed by conceptualizing these phenomena more broadly as different kinds of information-access regulation. Furthermore, we outline a social-identity theory of information-access regulation (SITIAR) that proposes that information-access regulation shapes shared social identity, explaining why people who have access to information feel a sense of togetherness with others who have the same access and a sense of separation from those who do not. This theoretical framework unifies diverse findings across disparate lines of research and generates a number of novel predictions about how information-access regulation affects individuals and groups.

Background: The COVID-19 pandemic posed and continues to pose challenges for health care systems globally, particularly to Intensive Care Units (ICU). At the forefront of the ICU are highly trained nurses with a professional obligation to care for patients with COVID-19 despite the potential to become infected. The aim of this study was to explore ICU nurses' willingness to care during the COVID-19 pandemic., Methods: A prospective cross-sectional study to explore ICU nurses' willingness to provide care during the COVID-19 pandemic was undertaken between 25 March and 3 April 2020 at a large principal and referral teaching hospital in Sydney, NSW Australia., Results: A total of 83 ICU nurses completed the survey. Approximately 60% reported receiving sufficient information from managers regarding COVID-19 and about caring for a patient with COVID-19. Ninety percent of nurses were concerned about spreading COVID-19 to their family. Sixty one percent of the nurses indicated that they were willing to care for patients with COVID-19. Receiving timely communication from managers was the only predictor of willingness to care among ICU nurses., Conclusions: Effective communication is a vital component during a public health emergency in order to promote nurses' willingness to care for patients in the ICU., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Patients admitted to the isolation ward during the COVID-19 outbreak face multiple psychosocial stressors including the disruptive experience of being in quarantine, anxiety over contracting a newly emerging infectious disease and limited access to their healthcare team. This quality improvement project aims to leverage on technology to improve patients' access to, and experience of, care while in isolation.Patients admitted to two isolation wards in Singapore General Hospital (SGH) between 28 February and 19 March 2020 were each provided an iPad loaded with the MyCare application (app), curated materials and mobile games. During this period, 83 of them accessed the device and the app. MyCare app is an app developed by the nursing team in SGH as part of an existing interprofessional collaboration to help patients navigate their care during their inpatient stay. In response to COVID-19, MyCare app was supplemented with materials to address affected patients' informational and psychosocial needs. These materials included an information sheet on COVID-19, interviews with previous severe acute respiratory syndrome survivors, psychosocial support materials, and uplifting literature, illustrated storybooks and artwork.This paper describes the process of planning for, and executing, the intervention and reports the initial results of its effect. Initial feedback indicated a positive response to the intervention. 9 out of 10 respondents (90%) rated their hospital experience with a maximum of five stars and all 10 respondents (100%) rated the psychosocial support materials with five stars. Doctors managing the patients also observed a reduction in the number of commonly asked questions following the deployment of the iPad.This quality improvement project is ongoing with plans for further research to determine how to better support the psychosocial needs of patients in isolation during a novel disease outbreak. This report is written based on the Standards for Quality Improvement Reporting Excellence guidelines., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background Context: Patients and their families are increasingly turning to the internet for medical information. Most of these patients believe the information to be accurate and reliable. However, the quality and accuracy of that information on the internet is variable and unregulated. Accurate and applicable information may align patients' expectations and improve satisfaction and overall outcomes., Purpose: This study aimed to evaluate the quality and accuracy of scoliosis-related information available on the internet., Study Design: Cross-sectional analysis., Methods: Independent searches were conducted on the three most commonly accessed search engines (Google, Yahoo and Bing) using the keyword "scoliosis". The top 30 sites from each search engine were reviewed. Each website was categorized as per its authorship and sourcing. Each site was then evaluated for accuracy, readability and with quality-assurance markers such as Health on the Net code (HONcode), DISCERN, Journal of American Medical Association (JAMA) systems. The accuracy of the website was assessed by two fellowship-trained spine specialists. Website accuracy was rated on a scale of 1-4 based on the level of agreement with the information presented. Websites with greater than 75% agreement were rated 4. Finally, the sites were evaluated with a validated website distraction index and assessed for mobile friendliness., Results: 42 unique websites were analyzed. 31% of the sites were categorized as academic (13 academic, 9 healthcare system, 12 health news outlets and 8 unspecified) and had the highest rate of physician authorship (54%). Accuracy ranged from less than 25% to more than 75% were recorded with a mean accuracy of 3 signifying 50-75% agreement. Academic sites had the highest scoliosis specific accuracy score (P < 0.05). Overall, average readability was at a 12th grade reading level. More than 90% of the sites were mobile friendly. Approximately 71% of the websites did not have HONcode certification, although health news outlets had the highest rate of certification (67%). There was a significant effect of HONcode certification on DISCERN, JAMA, grade level and reading ease. On average, HONcode certified websites had lower grade level readability with greater reading ease and higher DISCERN and JAMA scores than un-certified sites (p < 0.05). On average, health news outlets had the highest DISCERN, JAMA, and reading ease scores and were written at the lowest grade reading level but had the highest level of distraction (p < 0.05)., Conclusion: For the iGeneration and their care-givers, the internet remains the most popular source of health-related and medical information. Despite the wide number of sources available, the quality, accuracy, pertinence and intelligibility of the information remains highly variable. As clinicians, we should direct patients to verifiable sites with regulated information and, where possible, contribute high quality information to those sites.

The ultimate goal of engineering in medicine and biology (EMB) researchers is to improve medical care for patients and communities all over the world by providing a collaborative environment for engineer-scientists and clinicians. In order for this collaboration to occur, however, there must be a widely indexed platform that promotes communication among researchers across a spectrum of nations, both economically developed and underdeveloped, and between engineer-scientists and clinicians who are less likely to have access to IEEE Xplore. In response to this need, the EMB Society (EMBS) created the Journal of Translational Engineering in Health and Medicine (JTEHM), its first Gold Open Access (OA) journal. At its inception in 2012, JTEHM outlined a bold, comprehensive objective: Our unique mission-to bring together scientific researchers, practicing clinicians, and engineers to develop actionable, practical solutions for patients, families, and caregivers-requires open communication and free access.

Highly portable, cloud-enabled neuroimaging technologies will fundamentally change neuroimaging research. Instead of participants traveling to the scanner, the scanner will now come to them. Field-based brain imaging research, including populations underrepresented in neuroscience research to date, will enlarge and diversify databases and pave the way for clinical and direct-to-consumer (DTC) applications. Yet these technological developments urgently require analysis of their ethical, legal, and social implications (ELSI). No consensus ethical frameworks for mobile neuroimaging exist, and existing policies for traditional MRI research are inadequate. Based on literature review and ethics analysis of neurotechnology development efforts, Shen et al. identify seven foundational, yet unresolved, ELSI issues posed by portable neuroimaging: (1) informed consent; (2) privacy; (3) capacity to accurately communicate neuroimaging results to remote participants; (4) extensive reliance on cloud-based artificial intelligence (AI) for data analysis; (5) potential bias of interpretive algorithms in diverse populations; (6) return of research results and incidental (or secondary) findings to research participants; and (7) responding to participant requests for access to their data. The article proposes a path forward to address these urgent issues., (Copyright © 2020. Published by Elsevier Inc.)

Background: The Thoracic Surgery Social Media Network (TSSMN) is a social media collaborative formed in 2015 by The Annals of Thoracic Surgery and The Journal of Thoracic and Cardiovascular Surgery to bring social media attention to key publications from both journals and to highlight major accomplishments in the specialty. Our aim is to describe TSSMN's preliminary experience and lessons learned., Methods: Twitter analytics was used to obtain information regarding the @TSSMN Twitter handle and #TSSMN hashtag. TweetChat and general hashtag #TSSMN analytics were measured using Symplur (Symplur LLC, Los Angeles, Calif). A TSSMN Tweeter App was created, and its use and downloads were analyzed., Results: Hashtag #TSSMN has a total of 17,181 tweets, 2100 users, and 32,226,280 impressions, with peaks in tweeting activity corresponding to TweetChats. Thirteen 1-hour TweetChats drew a total of 489 participants, 5195 total tweets, and 17,297,708 total impressions. The top demographic category of TweetChat participants included Doctors (47%), Advocates/Supports (11%), and Unknown (10%), with 3% characterized as patients. The TSSMN Tweeter iTunes App (Apple, Cupertino, Calif) was downloaded 3319 times with global representation. A total of 859 articles were viewed through the App, with 450 articles from The Annals of Thoracic Surgery and 409 from The Journal of Thoracic and Cardiovascular Surgery., Conclusions: We demonstrate that TSSMN further enhances the ability for the journals to connect with their readership and the cardiothoracic community. Ongoing studies to correlate social media attention with article reads, article-level metrics, citations, and journal impact factor are eagerly awaited., (Copyright © 2019. Published by Elsevier Inc.)

This study explored how young adult women manage privacy regarding their health information as dependents on a parent's insurance policy. Under current and proposed health care reform in the United States, young adults between the ages of 18 and 26 years can remain on a parent's policy as a dependent, which can improve young adult's access to health care services. Although dependent expansion provisions can improve coverage for young adults, it may also threaten their privacy by giving a parent access to adult-child's private health information. Using Communication Privacy Management, this study investigated how dependent young adult women conceptualize and negotiate information ownership with parents in a forced disclosure situation. Results revealed young adult women either felt they alone should own and control their health information or believed a parent as the policy hold should have access to the information. However, all preferred to be in control of the disclosure and used core and catalyst criteria to manage the privacy dilemma current health care policy creates. Specifically, the threat of a parent seeing an adult-child used a stigmatized health service motivated young adult women to engage in deception, pay out of pocket for services covered by insurance, and put off or avoid health care. Results of this study complicate assumptions about privacy management and demonstrate how health care policy affects family communication.

Portals to allow patients to access their primary care medical records are necessary to achieve true collaborative care between doctors and patients. In this article, we outline a practical approach to achieving this goal that involves Ministries of Health, electronic medical record vendors, physicians and patients. Patient portals to primary care records could make possible an entirely new world of on-the-spot, customized learning. Patient portals ideally should be designed with the goal of optimizing patients' to better their ability to help themselves. Delaying implementation of these portals exacts a continued financial and personal hardship on patients and their families., (Copyright © 2019 Longwoods Publishing.)

Purpose: To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment., Methods: A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines., Results: Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%)., Conclusion: While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences., Practice Implications: A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.

We present a decentralised solution for managing scientific communication, based on distributed ledger technologies, also called blockchains. The proposed system aims to solve incentive problems displayed by traditional systems in scientific communication and publication. A minimal working model is presented, defining roles, processes, and expected results from the novel system. The proposed solution is viable, given the current status of blockchain technology, and should lead to a rethinking of current practices and their consequences for scientific communication.

The Internet is increasingly used for health-related purposes and evolves with the ever-changing needs of patients. The aim of this study was to assess the level of reliance on the Internet as a health information source, to examine which online communication activities are the most common for health purposes, and to determine the attitudes and needs of patients in this area and the factors affecting its use. A total of 1000 adults were selected from the Polish population by random sampling. The survey was administered by the Computer-Assisted Telephone Interview (CATI). The study concluded that 76.9% of the participants used the Internet for health purposes, among whom 72.6% of active and 27.4% of passive users were distinguished. The role of the Internet as a source of health information has increased, which corresponds to a growing interest in online health services. The majority of individuals searching for health information in the Internet lived in urban areas, had a high level of education, and was professionally active. We conclude that the increased interest in the use of the Internet related to health determines the direction in which e-health should be developed in the future.

Introduction: The purpose of this article is to highlight the importance of assessing health literacy in the radiotherapy department and to discuss the challenges in practice. The paper aims to identify factors to facilitate improved access to, and understanding of, health information for patients with low health literacy., Methods: A literature search was conducted using PubMed, CINAHL, Medline and Cochrane library. Non English language studies and non-healthcare related studies were excluded., Results: The search identified 9 articles relevant to assessment of low literacy and 16 articles that address communication skills and low literacy. Four key themes were identified from the selected articles: CONCLUSION: Current health literacy screening tools as a means of identifying patients with low literacy are not suitable for use in the radiotherapy department. Patient factors such as age, socioeconomic status, and education level, as well as the use of patient's evasion techniques can indicate low literacy. To address limited literacy skills, speaking in plain English, encouraging patients to ask questions and assessing patient's understanding are important methods to promote effective communication of information in patients with low literacy skills., (Copyright © 2018 The College of Radiographers. Published by Elsevier Ltd. All rights reserved.)

Introduction: Neighbouring Trusts have implemented open access (walk-in) services to shorten waiting times in x-ray. Despite this, staff perceptions of their effectiveness have not yet been studied. This study forms the initial baseline evaluation phase of wider participatory action research investigating the implementation of an open access service for general practitioner musculoskeletal x-ray referrals. Staff perceptions regarding effectiveness of the current service were gathered, including their opinions regarding the effectiveness of open access services., Methods: Qualitative data were obtained via three semi-structured interviews with radiology management and two (cross-site) staff focus groups over a 2 month period. Template analysis was used to interpret the data with the aid of NVIVO 11 to facilitate analysis., Results: Template analysis uncovered several drivers for changing the current service including waiting times, external pressures, patient choice and administrative delays. 'Flexibility' was the key theme to arise during discussion regarding the effectiveness of the current service. Potential for improved access was highlighted as a major benefit to the implementation of open access, however 'workload', 'staffing' and 'communication' were all identified as potential barriers to its implementation., Conclusion: Although several staff members were satisfied with current service several drivers for change were identified that need to be addressed in order to truly deliver a service that fulfils the patients' needs. Results will inform the wider participatory action research that will investigate the barriers to implementing an open access service and identify whether this is indeed a suitable method of addressing the drivers for change., (Copyright © 2018 The College of Radiographers. Published by Elsevier Ltd. All rights reserved.)

Growth of the open science movement has drawn significant attention to data sharing and availability across the scientific community. In this study, we tested the ability to recover data collected under a particular funder-imposed requirement of public availability. We assessed overall data recovery success, tested whether characteristics of the data or data creator were indicators of recovery success, and identified hurdles to data recovery. Overall the majority of data were not recovered (26% recovery of 315 data projects), a similar result to journal-driven efforts to recover data. Field of research was the most important indicator of recovery success, but neither home agency sector nor age of data were determinants of recovery. While we did not find a relationship between recovery of data and age of data, age did predict whether we could find contact information for the grantee. The main hurdles to data recovery included those associated with communication with the researcher; loss of contact with the data creator accounted for half (50%) of unrecoverable datasets, and unavailability of contact information accounted for 35% of unrecoverable datasets. Overall, our results suggest that funding agencies and journals face similar challenges to enforcement of data requirements. We advocate that funding agencies could improve the availability of the data they fund by dedicating more resources to enforcing compliance with data requirements, providing data-sharing tools and technical support to awardees, and administering stricter consequences for those who ignore data sharing preconditions., Competing Interests: The authors have declared that no competing interests exist.

Aims and Objectives: To develop an understanding of south Asian and Chinese people's preferences about where to find health information and how best to receive health information, relative to their white counterparts., Background: South Asian and Chinese ethnic groups represent the largest proportion of Canada's growing visible minorities. There may be challenges to ensuring that south Asian and Chinese people have access to health information in the same way that others do., Design: Qualitative descriptive., Methods: Fifty-two participants (12 white, 16 south Asian and 24 Chinese) engaged in six focus groups (two for each ethnocultural group). Focus groups were conducted in English, Punjabi and Cantonese, with the assistance of Punjabi and Cantonese interpreters. Questions were focused on how participants have preferred or would prefer to receive health information (e.g., when, where, what format, from whom), as well as the facilitators and barriers to understanding the health information., Results: Participants agreed that although physicians were their primary source for health information, they also used written materials, media and the Internet to glean information. Participants identified concerns regarding the use of technical jargon by healthcare providers. South Asians and Chinese referred to their English language fluency and the lack of ethnoculturally specific information as additional challenges to understanding information they were offered. Whether and how family members were included in the communication process, also varied by ethnocultural group., Conclusions: As Canada welcomes immigrants from other countries, and its population becomes more diverse, healthcare providers need to have an understanding of the potential diversity in how to approach offering health information., Relevance to Clinical Practice: Healthcare providers need to consider what people of different ethnocultural backgrounds need when developing effective health communication strategies., (© 2018 John Wiley & Sons Ltd.)

The spread and uptake of new ideas (diffusion of innovations) is critical for organizations to adapt over time, but there is little evidence of how this happens within organizations and to their broader community. To address this, we analyzed how individuals accessed information about a recent science innovation at a large, international, biodiversity conservation non-profit-The Nature Conservancy-and then traced the flow of how this information was shared within the organization and externally, drawing on an exceptionally data-rich environment. We used surveys and tracking of individual internet activity to understand mechanisms for early-stage diffusion (knowledge seeking and sharing) following the integration of social science and evidence principles into the institutional planning framework: Conservation by Design (CbD 2.0). Communications sent to all employees effectively catalyzed 56.4% to exhibit knowledge seeking behavior, measured by individual downloads from and visits to a restricted-access site. Individuals who self-reported through a survey that they shared information about CbD 2.0 internally were more likely to have both received and sought out information about the framework. Such individuals tended to hold positions within a higher job grade, were more likely to train others on CbD as part of their job, and to enroll in other online professional development offerings. Communication strategies targeting external audiences did not appear to influence information seeking behavior. Staff who engaged in internal knowledge sharing and adopting "evidence" practices from CbD 2.0 were more likely to have shared the document externally. We found a negative correlation with external sharing behavior and in-person trainings. Our findings suggest repeated, direct email communications aimed at wide audiences can effectively promote diffusion of new ideas. We also found a wide range of employee characteristics and circumstances to be associated with knowledge diffusion behavior (at both an organizational and individual level).

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  = 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.(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.

Introduction: Patients require an accurate knowledge about placebos and their possible effects to ensure consent for placebo-controlled clinical trials is adequately informed. However, few previous studies have explored patients' baseline (ie, pretrial recruitment) levels of understanding and knowledge about placebos. The present online survey aimed to assess knowledge about placebos among patients with a history of back pain., Design: A 15-item questionnaire was constructed to measure knowledge about placebos. Additional questions assessed sociodemographic characteristics, duration and severity of back pain, and previous experience of receiving placebos., Setting: Participants recruited from community settings completed the study online., Results: 210 participants completed the questionnaire. 86.7% had back pain in the past 6 months, 44.3% currently had back pain. 4.3% had received a placebo intervention as part of a clinical trial and 68.1% had previously read or heard information about placebos. Overall knowledge of placebos was high, with participants on average answering 12.07 of 15 questions about placebos correctly (SD=2.35). However, few participants correctly answered questions about the nocebo effect (31.9% correct) and the impact of the colour of a placebo pill (55.2% correct)., Conclusions: The findings identified key gaps in knowledge about placebos. The lack of understanding of the nocebo effect in particular has implications for the informed consent of trial participants. Research ethics committees and investigators should prioritise amending informed consent procedures to incorporate the fact that participants in the placebo arm might experience adverse side effects., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient-provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID., Competing Interests: Competing interests: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

As the specter of climate change looms on the horizon, people will face complex decisions about whether to support climate change policies and how to cope with climate change impacts on their lives. Without some grasp of the relevant science, they may find it hard to make informed decisions. Climate experts therefore face the ethical need to effectively communicate to non-expert audiences. Unfortunately, climate experts may inadvertently violate the maxims of effective communication, which require sharing communications that are truthful, brief, relevant, clear, and tested for effectiveness. Here, we discuss the 'mental models' approach towards developing communications, which aims to help experts to meet the maxims of effective communications, and to better inform the judgments and decisions of non-expert audiences.

Introduction: Vaccine acceptance is a critical component of sustainable immunization programs, yet rates of vaccine hesitancy are rising. Increased access to misinformation through media and anti-vaccine advocacy is an important contributor to hesitancy in the United States and other high-income nations with robust immunization programs. Little is known about the content and effect of information sources on attitudes toward vaccination in settings with rapidly changing or unstable immunization programs., Objective: The objective of this study was to explore knowledge and attitudes regarding vaccines and vaccine-preventable diseases among caregivers and immunization providers in Botswana, the Dominican Republic, and Greece and examine how access to information impacts reported vaccine acceptance., Methods: We conducted 37 focus groups and 14 semi-structured interviews with 96 providers and 153 caregivers in Botswana, the Dominican Republic, and Greece. Focus groups were conducted in Setswana, English, Spanish, or Greek; digitally recorded; and transcribed. Transcripts were translated into English, coded in qualitative data analysis software (NVivo 10, QSR International, Melbourne, Australia), and analyzed for common themes., Results: Dominant themes in all three countries included identification of health care providers or medical literature as the primary source of vaccine information, yet participants reported insufficient communication about vaccines was available. Comments about level of trust in the health care system and government contrasted between sites, with the highest level of trust reported in Botswana but lower levels of trust in Greece., Conclusions: In Botswana, the Dominican Republic, and Greece, participants expressed reliance on health care providers for information and demonstrated a need for more communication about vaccines. Trust in the government and health care system influenced vaccine acceptance differently in each country, demonstrating the need for country-specific data that focus on vaccine acceptance to fully understand which drivers can be leveraged to improve implementation of immunization programs.

Background: The appropriate access to public information is very important for healthcare system stakeholders. The goal of this study was to examine how the execution of the formally existing right to public information on the HTA-based recommendations on reimbursement of new health technologies from public funds has been changing in Poland., Methods: All recommendations published within two predefined equal periods of time between 2013 and 2015 were analyzed. The gathered data was subjected to statistical analysis., Results: The frequency and intensity of censoring the published HTA-based recommendations on the pharmaceutical reimbursement has diminished. The text readability and clarity of message has improved, although the degree of decisiveness of the recommendations has dropped., Conclusion: The positive changes in the public communication policy should be continued. The transparency of the HTA-based recommendations should be increased further in some areas in the future.

Background: Health care is shifting from a paternalistic to a participatory model, with increasing patient involvement. Medical record accessibility to patients may contribute significantly to patient comanagement., Objectives: To systematically review the literature on the patient perspective of effects of personal medical record accessibility on the individual patient, patient-physician relationship and quality of medical care., Methods: Screening of PubMed, Web of Science, Cinahl, and Cochrane Library on the keywords 'medical record', 'patient record', 'communication', 'patient participation', 'doctor-patient relationship', 'physician-patient relationship' between 1 January 2002 and 31 January 2016; systematic review after assessment for methodological quality., Results: Out of 557 papers screened, only 12 studies qualified for the systematic review. Only a minority of patients spontaneously request access to their medical file, in contrast to frequent awareness of this patient right and the fact that patients in general have a positive view on open visit notes. The majority of those who have actually consulted their file are positive about this experience. Access to personal files improves adequacy and efficiency of communication between physician and patient, in turn facilitating decision-making and self-management. Increased documentation through patient involvement and feedback on the medical file reduces medical errors, in turn increasing satisfaction and quality of care. Information improvement through personal medical file accessibility increased reassurance and a sense of involvement and responsibility., Conclusion: From the patient perspective medical record accessibility contributes to co-management of personal health care.

Objective: To review the legal issues concerning family members' access to information when patients are in the ICU., Data Sources: U.S. Code, U.S. Code of Federal Regulations, and state legislative codes., Data Extraction: Relevant legal statutes and regulations were identified and reviewed by the two attorney authors (L. F., M. A. V.)., Study Selection: Not applicable., Data Synthesis: Review by all coauthors., Conclusions: The Health Insurance Portability and Accountability Act and related laws should not be viewed as barriers to clinicians sharing information with ICU patients and their loved ones. Generally, under Health Insurance Portability and Accountability Act, personal representatives have the same authority to receive information that patients would otherwise have. Persons involved in the patient's care also may be given information relevant to the episode of care unless the patient objects. ICUs should develop policies for handling the issues we identify about such information sharing, including policies for responding to telephone inquiries and methods for giving patients the opportunity to object to sharing information with individuals involved in their care. ICU clinicians also should be knowledgeable of their state's laws about how to identify patients' personal representatives and the authority of those representatives. Finally, ICU clinicians should be aware of any special restrictions their state places on medical information. In aggregate, these strategies should help ICU managers and clinicians facilitate robust communication with patients and their loved ones.

Background: Withholding information from cancer patients is a common practice in many Asian countries, including China, Japan, and Singapore, as well as in some Western countries, such as Spain, Greece, and Italy. Much research has investigated why doctors withhold information from cancer patients generally, both in the West and the East, but little research has been done on specifically why Chinese doctors withhold such information., Methods: Three focus group interviews were conducted with a total of 16 oncologists in China. The interviews were recorded, transcribed, and translated. Qualitative data were analyzed using systematic text condensation., Results: The result of this study revealed numerous circumstances that can lead to non-disclosure of cancer-related information. Many of these circumstances have been described in previous studies about non-disclosure in other countries. We found two additional circumstances that have not been described in previous literature and might therefore expand our current knowledge about this phenomenon; they are contradiction between laws and fear for personal safety., Conclusion: Numerous circumstances can lead to non-disclosure of cancer-related information. This study found two additional circumstances that might lead to non-disclosure. The findings of this study suggest further assessment and clarification about the laws that govern doctor-patient communication and that action should be taken to ensure safe working environments for Chinese oncologists., Competing Interests: The authors declare that they have no conflict of interest.

Pediatric intensive care units (PICUs), whose accessibility to parents raises controversy, often operate under their own rules. Patients are under critical and unstable conditions, often in a life-threatening situation. In this context, the communication with the parents and their participation in the unit may be difficult. Information is a legal, deontological, and moral duty for caregivers, confirmed by the parents' needs. But the ability to enforce them is a challenge, and there is a gap between the theory and the reality. The communication between the parents and the physicians starts at the admission of the child with a family conference. According to the Société de réanimation de langue française (SRLF), the effectiveness of the communication is based on three criteria: the patients' comprehension, their satisfaction and their anxiety and depression. It has been shown that comprehension depends on multiple factors, related on the parents, the physicians, and the medical condition of the child. Regarding the parents' participation in the organization of the service, the parents' presence is becoming an important factor. In the PICU, the parents' status has evolved. They become a member of the care team, as a partner. The best interest of the child is always discussed with the parents, as the person knowing the best their child. This partnership gives them a responsibility, which is complementary to the physician's one, but does not substitute it., (Copyright © 2016 Elsevier Masson SAS. All rights reserved.)

Oncology is a rapidly developing field with a growing number of publications every year. The main goal of this survey was to learn more about the information needs of oncologists and general practitioners. Data were collected using a standardised questionnaire developed in collaboration with the German Cancer Society (Deutsche Krebsgesellschaft) and the German Association of General Practitioners (Deutscher Hausärzteverband). A total of 495 questionnaires could be evaluated. Medical congresses were the preferred source of information for all participants. General practitioners preferred textbooks, while oncologists preferred journals and the Internet (all p < .001). Reasons for a lack of confidence during patient consultation were lack of time (60% of participants), lack of knowledge (61% of general practitioners and 26% of oncologists) and lack of data (>50%). Oncologists felt more confident in searching scientific databases than general practitioners did. Both groups required rapid access to transparent information. For general practitioners, reviews and comments by experts helped to put new information in the context of cancer treatment. Oncologists and general practitioners showed significantly different information needs and different ways to access specific information. In order to better integrate general practitioners while simultaneously serving the needs of oncologists, a database that is up to date, rapidly accessible and does not incur high costs would be helpful., (© 2016 John Wiley & Sons Ltd.)

Aim: To explore the role and needs of the family carer across different acute care contexts and their level of involvement in the care of their relative with dementia in this setting., Methods: A pragmatic, exploratory-descriptive qualitative approach. A convenience sample of 30 family carers across three sites completed semi-structured interviews., Results: Family carers wanted to be involved in the acute care of their family member with dementia. They acknowledged the importance of a central source of information, educated staff, guidelines on roles and processes, and positive communication, as well as respect from staff for the carer's knowledge of the older person and their needs. They also highlighted the need for medical staff to discuss with them the family member's treatment and care., Conclusion: There is a need for family-focused interventions to improve communication and involvement of family in the care of family members with dementia in the acute setting., (© 2015 AJA Inc.)

This study fills demand for data on access and use of information and communication technologies (ICT) in the Brazilian legal Amazon, a region of localities with identical economic, political, and social problems. We use the 2010 Brazilian Demographic Census to compile data on urban and rural households (i) with computers and Internet access, (ii) with mobile phones, and (iii) with fixed phones. To compare the concentration of access to ICT in the municipalities of the Brazilian Amazon with other regions of Brazil, we use a concentration index to quantify the concentration of households in the following classes: with computers and Internet access, with mobile phones, with fixed phones, and no access. These data are analyzed along with municipal indicators on income, education, electricity, and population size. The results show that for urban households, the average concentration in the municipalities of the Amazon for computers and Internet access and for fixed phones is lower than in other regions of the country; meanwhile, that for no access and mobile phones is higher than in any other region. For rural households, the average concentration in the municipalities of the Amazon for computers and Internet access, mobile phones, and fixed phones is lower than in any other region of the country; meanwhile, that for no access is higher than in any other region. In addition, the study shows that education and income are determinants of inequality in accessing ICT in Brazilian municipalities and that the existence of electricity in rural households is directly associated with the ownership of ICT resources.

Background: Mobile learning (mLearning) uses wireless networks and mobile devices to expand physician trainees' and healthcare providers' access to and exchange of medical information. Opportunities to increase implementation and expand use of mobile devices to support health care information access and delivery in Africa are vast, but the rapid growth of mLearning has caused project implementation to outpace objective measurement of impact. This study makes a contribution to the existing body of literature regarding mLearning implementation in Africa through its focus on the use of smart devices (tablets) in undergraduate medical education and medical students' perceptions of the effects on their learning environment., Materials and Methods: The population of this prospective mixed-methods study consisted of 82 undergraduate medical students (45 third year and 37 fourth year) at the University of Botswana Faculty of Medicine. They received tablets in the earliest phase of the mLearning project implementation (between November 2012 and January 2013), when they were in the third and fourth year of their medical training. Usage of the tablets was assessed both quantitatively and qualitatively, through both application usage tracking and focus groups., Results: Based on application usage data and coding and analysis of focus group discussions, undergraduate medical students indicated that tablets were useful in their medical education, allowing them continual access to information and opportunities for communication. Participants noted that the primary barrier to use of tablets was the lack of mobile cellular Internet beyond the Wi-Fi zones at the training sites. Moreover, participants offered suggestions for improvements to the implementation process., Conclusions: Even in resource-limited settings where Internet access can be unreliable and intermittent, the adoption of tablets can have benefits to medical education by providing consistent access to extensive and current medical information resources. This study highlights the value of clinical resources with offline functionality, with or without consistent access to the Internet. There is also the potential for optimizing the use of tablets through improved training and technical support., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)