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The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.
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American Heart Association , Difusión de la Información , Humanos , Estados Unidos , Recolección de DatosRESUMEN
PURPOSE: This study investigated how trusting information on cancer varies by the source of information and political viewpoint. METHODS: This study used cross-sectional survey data from the 2020 Health Information National Trends Survey (HINTS). The study comprised a sample of 2949 adults 18 years and older. The outcome variable was measured by assessing respondents' trust in cancer-related information from various sources, including religious organizations and leaders, government health agencies, charitable organizations, family or friends, and doctors. Political viewpoint was measured as liberal, moderate, and conservative. Multivariate linear probability models were estimated and adjusted for individual-level characteristics. RESULTS: Multivariate analysis found that conservatives (73%, 95% CI = 68-78%) were significantly less likely to trust information on cancer from government health agencies compared to liberals (84%, 95% CI = 80-88%). There was no statistically significant difference in trusting government health agencies between liberals and moderates (80%, 95% CI = 76-84%). Both moderates (27%, 95% CI = 21-34%) and conservatives (34%, 95% CI = 29-39%) were more likely to trust information on cancer from religious organizations and leaders compared to liberals (19%, 95% CI = 13-24%). The relationship between political viewpoint and trust of doctors, family or friends, and charitable organizations were not statistically significant. CONCLUSION: Compared to liberals, conservatives are more likely to trust information on cancer from religious organizations and leaders and less likely to trust government health agencies when adjusting for other covariates. This finding emphasizes the role of political viewpoint in shaping individuals' perceptions of information sources and cancer-related information.
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Neoplasias , Confianza , Adulto , Humanos , Estudios Transversales , Encuestas y Cuestionarios , Fuentes de InformaciónRESUMEN
OBJECTIVE: Understand if cancer fatalism among adult social media users in the United States is linked to social media informational awareness and if the relationship varies by education level. METHODS: Cross-sectional data from the 2022 Health Information National Trends Survey (n = 3,948) were analyzed using multivariable linear probability models. The study population was defined as social media users active within the past year. The outcome variable was cancer fatalism and the predictor variables were social media informational awareness and education level. RESULTS: Participants with low social media informational awareness were 9% (95% CI = 3, 15), 6% (95% CI = 1, 11), and 21% (95% CI = 14, 27) percentage points more likely to agree that it seems like everything causes cancer, you cannot lower your chances of getting cancer, and there are too many cancer prevention recommendations to follow, respectively. Participants with a college degree or higher level of education and who reported high social media informational awareness were the least likely to agree that everything causes cancer (60%; 95% CI = 54, 66), you cannot lower your chances of getting cancer (14%; 95% CI = 10, 19), and there are too many cancer prevention recommendations to follow (52%; 95% CI = 46, 59). CONCLUSION: Social media informational awareness was associated with lower levels of cancer fatalism among adult social media users. College graduates with high social media informational awareness were the least likely to report cancer fatalism.
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PURPOSE: Our goal was to understand the general attitudes of pediatric urologists regarding the US News & World Report rankings for Best Children's Hospitals in Urology. MATERIALS AND METHODS: We performed a cross-sectional survey study distributed via email to active and candidate members of the Societies of Pediatric Urology from October 2022 to December 2022. This anonymous survey was iteratively developed to contain multiple choice questions gathering information on demographics, personal interaction with the rankings system, and about attitudes toward the rankings across various domains. RESULTS: Of the 515 members surveyed, 264 pediatric urologists responded to the survey for a response rate of 51%. There was representation from all sections of the AUA and across all age categories and practice models. Overall, of the respondents, 71% disagreed that the rankings had led to improvements in care and 75% disagreed that programs were reporting their data honestly. Additionally, 71% believed the rankings are inaccurate in reflecting patient outcomes. The majority (86%) of respondents stated they would support organized efforts to withdraw from the rankings. This was significantly different by ranking cohort, with 78% from top 10 programs endorsing withdrawal vs 89% from those programs not in the top 10. CONCLUSIONS: Our survey found that most pediatric urologists would support efforts to withdraw from participating in the rankings and believe that programs are dishonest in reporting their data. The majority also do not believe a survey can adequately distinguish between programs. This highlights a clear need for a critical reevaluation of the rankings.
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BACKGROUND: Public involvement enhances the relevance, quality, and impact of research. There is some evidence that public involvement in Australian research lags other countries, such as the United Kingdom. The purpose of the systematic review was to establish the rates and describe the characteristics of public involvement in Australian clinical trials. METHODS: We reviewed evidence of public involvement in all Australian randomised controlled trials published in the first 6 months of 2021. To determine the quality of public involvement, we used the five-item short-form version of the Guidance of Reporting Involvement Patients and the Public, version 2. RESULTS: In total, 325 randomised controlled trials were included, of which 17 (5%) reported any public involvement. Six trials reported public involvement in setting the research aim and seven in developing study methods. The authors of one study reflected on the overall role and influence of public involvement in the research. CONCLUSION: Rate of public involvement in Australian clinical trials is seemingly substantially lower than those reported in countries with similar advanced public health care systems, notably the United Kingdom. Our observations may be explained by a lack of researcher skills in how to involve the public and the failure by major funding agencies in Australia to mandate public involvement when deciding on how to award grant funding.
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Participación de la Comunidad , Ensayos Clínicos Controlados Aleatorios como Asunto , Australia , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , Participación de la Comunidad/métodos , Proyectos de InvestigaciónRESUMEN
INTRODUCTION: The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. METHODS: This qualitative study, informed by Kaupapa Maori principles, included focus groups of children aged 5-11 years and young people aged 12-18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio-recorded, transcribed and analysed using thematic analysis. FINDINGS: Key themes were identified: letters sometimes acted as 'discourses of disempowerment'-some participants experienced a lack of safety, depersonalisation with medical jargon and 'feeling like a number'. Participants described the need for acknowledgement and affirmation in written communication-health feedback should include validation, choice regarding content, respectful tone and a strengths-based approach to health messages. INTERPRETATION: Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. PATIENT CONTRIBUTION: This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community-based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Maori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym.
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Cuidadores , Grupos Focales , Estilo de Vida Saludable , Investigación Cualitativa , Humanos , Cuidadores/psicología , Femenino , Masculino , Nueva Zelanda , Niño , Adolescente , Preescolar , Retroalimentación , Adulto , ComunicaciónRESUMEN
BACKGROUND: People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers' perspective in healthcare. This study aims to investigate the use, applicability, and dissemination of PVGs in oncology from the healthcare providers' perspective in Germany. METHODS: Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring's qualitative content analysis with MAXQDA software was utilised to analyse the data. RESULTS: A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients' knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician-patient talks. Healthcare provider's unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients. CONCLUSION: Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician-patient communication.
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Personal de Salud , Médicos , Humanos , Femenino , Masculino , Oncología Médica , Alemania , ConcienciaciónRESUMEN
OBJECTIVE: The American Medical Association recommends health information to be written at a 6th grade level reading level. Our aim was to determine whether Artificial Intelligence can outperform the existing health information on kidney stone prevention and treatment. METHODS: The top 50 search results for "Kidney Stone Prevention" and "Kidney Stone Treatment" on Google, Bing, and Yahoo were selected. Duplicate webpages, advertisements, pages intended for health professionals such as science articles, links to videos, paid subscription pages, and links nonrelated to kidney stone prevention and/or treatment were excluded. Included pages were categorized into academic, hospital-affiliated, commercial, nonprofit foundations, and other. Quality and readability of webpages were evaluated using validated tools, and the reading level was descriptively compared with ChatGPT generated health information on kidney stone prevention and treatment. RESULTS: 50 webpages on kidney stone prevention and 49 on stone treatment were included in this study. The reading level was determined to equate to that of a 10th to 12th grade student. Quality was measured as "fair" with no pages scoring "excellent" and only 20% receiving a "good" quality. There was no significant difference between pages from academic, hospital-affiliated, commercial, and nonprofit foundation publications. The text generated by ChatGPT was considerably easier to understand with readability levels measured as low as 5th grade. CONCLUSIONS: The language used in existing information on kidney stone disease is of subpar quality and too complex to understand. Machine learning tools could aid in generating information that is comprehensible by the public.
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Inteligencia Artificial , Cálculos Renales , Estados Unidos , Humanos , Comprensión , Cálculos Renales/prevención & control , InternetRESUMEN
BACKGROUND: Due to the declining prevalence of dental caries, noncarious tooth defects such as erosive tooth wear have gained increased attention over the past decades. While patients more frequently search the internet for health-related information, the quality of patient-centered, web-based health information on erosive tooth wear is currently unknown. OBJECTIVE: This study aimed to assess the quality of patient-centered, web-based health information (websites and YouTube videos) on erosive tooth wear. METHODS: German-language websites were systematically identified through 3 electronic search engines (google.de, bing.de or yahoo.de, and duckduckgo.com) in September 2021. Eligible websites were independently assessed for (1) technical and functional aspects via the LIDA instrument, (2) readability via the Flesch reading-ease score, (3) comprehensiveness of information via a structured checklist, and (4) generic quality and risk of bias via the DISCERN instrument by 2 different reviewers. An overall quality score (ie, higher scores being favored) generated from all 4 domains was used as the primary outcome. Quality scores from each domain were separately analyzed as secondary outcomes and compared by the Friedman test. The effect of practice-specific variables on quality scores of websites from private dental offices was assessed using generalized linear modeling. Eligible YouTube videos were judged based on (1) the comprehensiveness of information, (2) viewers' interaction, and (3) viewing rate. The comprehensiveness of information was compared between websites and YouTube videos using the Wilcoxon rank-sum test. RESULTS: Overall, 231 eligible websites and 7 YouTube videos were identified and assessed. The median overall quality of the websites was 33.6% (IQR 29.8%-39.2%). Secondary outcome scores amounted to 64.3% (IQR 59.8%-69.0%) for technical and functional aspects, 40.0% (IQR 34.0%-49.0%) for readability, 11.5% (IQR 3.9%-26.9%) for comprehensiveness of information, and 16.7% (IQR 8.3%-23.3%) for generic quality. While the comprehensiveness of information and generic quality received low scores, technical and functional aspects as well as readability resulted in higher scores (both Padjusted<.001). Regarding practice-specific variables, websites from private dental offices outside Germany (P=.04; B=-6.64, 95% CI -12.85 to -0.42) or from dentists who are a dental society member (P=.049; B=-3.55, 95% CI -7.09 to -0.01) resulted in lower readability scores (ie, were more difficult to read), while a shorter time since dentists' examination resulted in higher readability scores (P=.01; B=0.24 per year, 95% CI 0.05-0.43). The comprehensiveness of information from YouTube videos was 34.6% (IQR 13.5%-38.5%). However, the comprehensiveness of information did not vary between websites and YouTube videos (P=.09). Additionally, viewers' interaction (1.7%, IQR 0.7%-3.4%) and viewing rates (101%, IQR 54.6%-112.6%) were low. CONCLUSIONS: The quality of German-language, patient-centered, web-based information on erosive tooth wear was limited. Especially, the comprehensiveness and trustworthiness of the available information were insufficient. Web-based information on erosive tooth wear requires improvement to inform patients comprehensively and reliably.
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Caries Dental , Medios de Comunicación Sociales , Telemedicina , Desgaste de los Dientes , Humanos , Comprensión , Atención Dirigida al Paciente , InternetRESUMEN
BACKGROUND: Healthcare consumers require diverse resources to assist their navigation of complex healthcare interactions, however, these resources need to be fit for purpose. AIM: In this study, we evaluated the utility, usability and feasibility of children, families and adults requiring long-term intravenous therapy using a recently developed mobile health application (App), intravenous (IV) Passport. DESIGN: Multi-site, parallel, multi-method, prospective cohort study. METHODS: A multi-site, multi-method study was carried out in 2020-2021, with 46 participants (20 adults, 26 children/family) reporting on their experiences surrounding the use of the IV Passport for up to 6 months. RESULTS: Overall, utility rates were acceptable, with 78.3% (N = 36) using the IV Passport over the follow-up period, with high rates of planned future use for those still active in the project (N = 21; 73%), especially in the child/family cohort (N = 13; 100%). Acceptability rates were high (9/10; IQR 6.5-10), with the IV Passport primarily used for documenting new devices and complications. Thematic analysis revealed three main themes (and multiple subthemes) in the qualitative data: Advocacy for healthcare needs, Complexity of healthcare and App design and functionality. CONCLUSION: Several recommendations were made to improve the end-user experience including 'how to' instructions; and scheduling functionality for routine care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The IV Passport can be safely and appropriately integrated into healthcare, to support consumers. IMPACT: Patient-/parent-reported feedback suggests the Intravenous Passport is a useful tool for record-keeping, and positive communication between patients/parents, and clinicians. REPORTING METHOD: Not applicable. PATIENT CONTRIBUTION: Consumers reported their experiences surrounding the use of the IV Passport for up to 6 months.
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Telemedicina , Adulto , Niño , Humanos , Estudios Prospectivos , Telemedicina/métodos , Atención a la Salud , Padres , ComunicaciónRESUMEN
PURPOSE: Children with chronic and complex health conditions frequently need intravenous devices. The current approach to intravenous device selection, insertion, and monitoring is inconsistent, and healthcare consumers are often negatively affected by siloed health information, and poor future planning. Despite child- and family-centred care being recognised as a pillar of paediatric nursing care, limited implementation for vascular access device planning and management is evident. DESIGN AND METHODS: To address this, we conducted a multi-phased approach to co-create, then evaluate, a mobile health (mHealth) application: IV Passport. Co-creation involved a prioritisation survey, followed by a Passport advisory panel consensus meeting. Following confirmation of the required content and features of the Passport, the mHealth application was designed and content validation achieved via survey. RESULTS: The prioritisation survey yielded recommendations for seven features (e.g., graphical presentations of current/past devices). Content for nine device types (e.g., totally implanted ports) was suggested, each with 10 related items (e.g., insertion site). Content items for device-associated complications, future vascular access plans, and educational resources were also suggested. Following design, the application was released through Apple and Android platforms; and adapted to a paper version. Content validation was established; 100% strongly agreed the application was easy to use; 80% agreed/strongly agreed that they would recommend the Passport to others. CONCLUSION: IV Passport embodies effective child- and family-centred care through consumer co-creation to empower patients and families manage vascular access devices. PRACTICE IMPLICATIONS: IV Passport remains active; and can be utilised across many healthcare settings and patient populations.
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Telemedicina , Dispositivos de Acceso Vascular , Humanos , Niño , Aplicaciones Móviles , Masculino , Femenino , Enfermedad Crónica , Enfermería PediátricaRESUMEN
BACKGROUND: Patients can often access the internet and social media for health information but it is not clear how much they trust and use the information retrieved. OBJECTIVE: To investigate the social media and internet use rates and preferences of orthopaedic patients, to reveal to what extent they self-treat, and to probe the affecting factors. METHODS: Two thousand fifty-eight patients admitted to an orthopaedic polyclinic were asked to fill out a survey (voluntarily) consisting of 15 items, to collect demographic data, preference for platforms and sources used, trusted sources, and the extent to which information obtained was used for self-care. RESULTS: The most preferred and most trusted sources of information were Google and other search engines, and physicians' personal websites (p < 0.001). DISCUSSION: Variables such as age, gender, educational level and occupation affect the research preferences. Reliance on social media decreases with increasing educational levels (p < 0.001). CONCLUSION: Health information and knowledge services should work with health professionals to improve aspects of health literacy among orthopaedic patients.
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Alfabetización en Salud , Ortopedia , Medios de Comunicación Sociales , Humanos , Encuestas y Cuestionarios , Escolaridad , InternetRESUMEN
BACKGROUND: Libraries provide public access to information that may be used to inform healthcare decisions. Exploring the health information needs of library-users could improve community health outcomes, especially during times of crisis like the COVID-19 pandemic. OBJECTIVE: The purpose of this study was to identify the health information needs of library-users to explore the potential role of libraries in advancing community health. METHODS: A quantitative, descriptive, cross-sectional survey was employed. RESULTS: One hundred and fifty participants in the (Memphis) Tennessee metropolitan area, ranging from 18 to 84 years of age, completed the survey between September 2020 and April 2021. Most respondents reported seeking physical and mental health-related information from libraries. In addition, nearly half of respondents reported delaying medical care due to risk of exposure to COVID-19, cost or appointment issues. DISCUSSION: Study results indicated that there were urgent health information needs among library-users in this community, that COVID-19 further limited or delayed access to information, and that library-users accessed health information during library visits. CONCLUSION: Public libraries have the potential to serve as information hubs to improve community health outcomes. Additional research should be conducted to collect qualitative community health information needs and the ways in which public library systems can address them.
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BACKGROUND: Infographics facilitate rapid information dissemination with enriched eye-catching content on social media, but it is unclear what factors affect the adoption of information presented in this way. OBJECTIVES: We tested whether the Information Acceptance Model applies to infographics on healthy lifestyle and fitness topics. METHODS: Two hundred and four university students were invited to participate in an online survey on their acceptance after reading some healthy lifestyle and fitness topics infographics shared on social media. The data collected were analysed using Partial Least Square path modelling. RESULTS: The results confirmed information usefulness as a predictor of information adoption; attitude towards information and information adoption were the predictors of behavioural intention. Information credibility and attitude towards information, but not information quality and needs, were significantly related to information usefulness. Social media usage and education level were factors affecting infographics impressions. DISCUSSION: Results support most hypotheses. It confirms information usefulness as a predictor of infographics adoption. Attitudes towards information and information adoption are predictors of behavioural intentions of following healthy lifestyle and fitness suggestions through social media infographics. CONCLUSION: Social media facilitates interpersonal communication, information exchange and knowledge sharing, and infographics may draw people into healthy lifestyle and fitness information items relevant to them.
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Estilo de Vida Saludable , Difusión de la Información , Medios de Comunicación Sociales , Humanos , Medios de Comunicación Sociales/estadística & datos numéricos , Masculino , Femenino , Difusión de la Información/métodos , Encuestas y Cuestionarios , Adulto , Estudiantes/psicología , Estudiantes/estadística & datos numéricosRESUMEN
BACKGROUND: Recently, public health data dashboards have gained popularity as trusted, up-to-date sources of health information. However, their usability and usefulness may be limited. OBJECTIVE: To identify the requirements of usable public health data dashboards through a case study with domain experts. METHODS: Paired-user virtual data collection sessions were conducted with 20 experts in three steps: (1) a monitored use of an existing dashboard to complete tasks and discuss the usability problems, (2) a survey rating user experience, and (3) an interview regarding the users and use cases. Data analysis included quantitative analysis of the survey findings and thematic analysis of the audio transcripts. RESULTS: Analyses yielded several findings: (1) familiar charts with clear legends and labels should be used to focus users' attention on the content; (2) charts should be organized in a simple and consistent layout; (3) contextual information should be provided to help with interpretations; (4) data limitations should be clearly communicated; (5) guidance should be provided to lead user interactions. DISCUSSION: The identified requirements guide health librarians and information professionals in evaluating public health data dashboards. CONCLUSION: Public health data dashboards should be designed based on users' needs to provide useful up-to-date information sources for health information consumers.
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BACKGROUND: The comprehension of the interests of Internet users regarding their health-related searches may reveal the community's demands about oral health. The study aimed to characterize the interests of Google users related to mouthwash in Australia, Brazil, Chile, Japan, Mexico, Russia, the United Kingdom, the United States, Saudi Arabia and South Africa applying the Google Trends. METHODS: This longitudinal retrospective study analysed the mouthwash-related interest of Google users from January 2004 to December 2020. The monthly variation of relative search volume (RSV) and the main queries related were determined using Google Trends. Autoregressive integrated moving average (ARIMA) forecasting models were built to establish the predictive RSV values for mouthwash for additional 12 months. Auto-correlation plots and a general additive model (GAM) were used to diagnose trends and seasonality in RSV curves. In addition, the influence of social isolation related to the outbreak of COVID-19 were analysed. RESULTS: The RSVs curves showed a considerable increase in searches related to mouthwash to AUS, BRA, JAP, MEX, GBR and USA (RSV > 25), while the growth was slight to CHI, KSA, RSA and RUS (RSV < 25) over the years, without influence of monthly seasonality. All countries showed a significant increase in mouthwash interest after the outbreak of COVID-19, except for KSA and RUS. The mouthwash-related searches were associated to specific brands or chemical compositions, treatments, whitening agents, homemade mouthwash and indications for the 'best mouthwash'. CONCLUSIONS: In general, there was an increasing interest of Google users in mouthwash-related topics between 2004 and 2020. In addition, in most countries, there was an expansion in searches during the social isolation of the COVID-19 pandemics.
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COVID-19 , Antisépticos Bucales , Humanos , Estados Unidos , Antisépticos Bucales/uso terapéutico , Estudios Retrospectivos , COVID-19/epidemiología , COVID-19/prevención & control , Brasil , Salud BucalRESUMEN
INTRODUCTION: Patients newly diagnosed with cancer often seek information prior to being seen by a specialist. Little is known about the type of information desired and the sources used. We asked how patients find information about their new cancer diagnoses to improve information provision. METHODS: An anonymous seven-question survey was provided to new patients in the surgical and medical oncology clinics at a comprehensive cancer center from February 2021 to June 2021. RESULTS: Of 503 consecutive patients, 405 (81%) returned surveys; 49% female, 57% aged 51-75 y, and 71% Caucasian. Many (74%) sought information before their visit. Most (57%) relied on prior medical providers and 77% reported them as a trusted source. Nearly 80% of patients used at least one nonvalidated resource; 21% friends and relatives, 20% nongovernment or hospital resources, and 12% social media. Importantly, 23% found conflicting information. Respondents desired information on cancer treatment (58%), alternative therapies (35%), and nutrition and supplements (31%). CONCLUSIONS: Patients with cancer trust information from medical providers but seek information from a variety of sources that can provide conflicting information. These data support encouraging patients to use validated sources, providing robust organization-based resources, and engaging patients on topics such as alternative therapies and nutrition.
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Neoplasias , Oncología Quirúrgica , Humanos , Femenino , Masculino , Estudios Transversales , Oncología Médica , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The internet serves an increasingly critical role in how older adults manage their personal health. Electronic patient portals, for example, provide a centralized platform for older adults to access lab results, manage prescriptions and appointments, and communicate with providers. This study examined whether neurocognition mediates the effect of older age on electronic patient portal navigation. METHOD: Forty-nine younger (18-35 years) and 35 older adults (50-75 years) completed the Test of Online Health Records Navigation (TOHRN), which is an experimenter-controlled website on which participants were asked to log-in, review laboratory results, read provider messages, and schedule an appointment. Participants also completed a neuropsychological battery, self-report questionnaires, and measures of health literacy and functional capacity. RESULTS: Mediation analyses revealed a significant indirect effect of older age on lower TOHRN accuracy, which was fully mediated by the total cognitive composite. CONCLUSIONS: Findings indicate that neurocognition may help explain some of the variance in age-related difficulties navigating electronic patient health portals. Future studies might examine the possible benefits of both structural (e.g., human factors web design enhancement) and individual (e.g., training and compensation) cognitive supports to improve the navigability of electronic patient health portals for older adults.
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Alfabetización en Salud , Portales del Paciente , Humanos , Anciano , Alfabetización en Salud/métodos , Encuestas y Cuestionarios , AutoinformeRESUMEN
YouTube has recently become one of the major sources of information in the field of health. Not only healthcare professionals but also laypersons can upload videos to YouTube and this fact creates a significant heterogeneity in the content, viewpoint, and accuracy of the available videos. Particularly, those videos presenting personal experiences and inferences on health problems may not rely on scientific evidence thus create inaccurate information. This commentary aims to propose an algorithm to improve the accuracy and reliability of health-related YouTube videos.
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BACKGROUND: Right from the beginning of the SARS-CoV-2 pandemic the general public faced the challenge to find reliable and understandable information in the overwhelming flood of information. To enhance informed decision-making, evidence-based information should be provided. Aim was to explore the general public's information needs and preferences on COVID-19 as well as the barriers to accessing evidence-based information. METHODS: We performed a cross-sectional study. Nine hundred twenty-seven panel members were invited to an online survey (12/2020-02/2021). The HeReCa-online-panel is installed at the Martin Luther University Halle-Wittenberg to assess regularly the general public's view on health issues in five regions in Germany. The survey was set up in LimeSurvey, with nine items, multiple-choice and open-ended questions that allowed to gather qualitative data. Quantitative data were analysed descriptively and a content analysis was carried out to categorise the qualitative data. RESULTS: Six hundred thirty-six panel members provided data; mean age 52 years, 56.2% female, and 64.9% with higher education qualifications. Asked about relevant topics related to COVID-19, most participants selected vaccination (63.8%), infection control (52%), and long-term effects (47.8%). The following 11 categories were derived from the qualitative analysis representing the topics of interest: vaccination, infection control, long-term effects, therapies, test methods, mental health, symptoms, structures for pandemic control, infrastructure in health care, research. Participants preferred traditional media (TV 70.6%; radio 58.5%; newspaper 32.7%) to social media, but also used the internet as sources of information, becoming aware of new information on websites (28.5%) or via email/newsletter (20.1%). The knowledge question (Which European country is most affected by the SARS-CoV-2 pandemic?) was correctly answered by 7.5% of participants. The Robert Koch Institute (93.7%) and the World Health Organization (78%) were well known, while other organisations providing health information were rarely known (< 10%). Barriers to accessing trustworthy information were lack of time (30.7%), little experience (23.1%), uncertainty about how to get access (22.2%), complexity and difficulties in understanding (23.9%), and a lack of target group orientation (15,3%). CONCLUSIONS: There are extensive information needs regarding various aspects on COVID-19 among the general population. In addition, target-specific dissemination strategies are still needed to reach different groups.