An assessment of the informative value of data sharing statements in clinical trial registries.

BACKGROUND: The provision of data sharing statements (DSS) for clinical trials has been made mandatory by different stakeholders. DSS are a device to clarify whether there is intention to share individual participant data (IPD). What is missing is a detailed assessment of whether DSS are providing clear and understandable information about the conditions for data sharing of IPD for secondary use. METHODS: A random sample of 200 COVID-19 clinical trials with explicit DSS was drawn from the ECRIN clinical research metadata repository. The DSS were assessed and classified, by two experienced experts and one assessor with less experience in data sharing (DS), into different categories (unclear, no sharing, no plans, yes but vague, yes on request, yes with specified storage location, yes but with complex conditions). RESULTS: Between the two experts the agreement was moderate to substantial (kappa=0.62, 95% CI [0.55, 0.70]). Agreement considerably decreased when these experts were compared with a third person who was less experienced and trained in data sharing ("assessor") (kappa=0.33, 95% CI [0.25, 0.41]; 0.35, 95% CI [0.27, 0.43]). Between the two experts and under supervision of an independent moderator, a consensus was achieved for those cases, where both experts had disagreed, and the result was used as "gold standard" for further analysis. At least some degree of willingness of DS (data sharing) was expressed in 63.5% (127/200) cases. Of these cases, around one quarter (31/127) were vague statements of support for data sharing but without useful detail. In around half of the cases (60/127) it was stated that IPD could be obtained by request. Only in in slightly more than 10% of the cases (15/127) it was stated that the IPD would be transferred to a specific data repository. In the remaining cases (21/127), a more complex regime was described or referenced, which could not be allocated to one of the three previous groups. As a result of the consensus meetings, the classification system was updated. CONCLUSION: The study showed that the current DSS that imply possible data sharing are often not easy to interpret, even by relatively experienced staff. Machine based interpretation, which would be necessary for any practical application, is currently not possible. Machine learning and / or natural language processing techniques might improve machine actionability, but would represent a very substantial investment of research effort. The cheaper and easier option would be for data providers, data requestors, funders and platforms to adopt a clearer, more structured and more standardised approach to specifying, providing and collecting DSS. TRIAL REGISTRATION: The protocol for the study was pre-registered on ZENODO ( https://zenodo.org/record/7064624#.Y4DIAHbMJD8 ).

Assessment of Lung Cancer YouTube Videos for Patient Education.

The internet is essential for obtaining information about lung cancer, which is the leading contributor to global cancer deaths. YouTube is a video-streaming platform that is popular among health consumers; however, the reliability of videos is variable, and few studies have evaluated their role in lung cancer education. This study uses a systematic approach to assess the characteristics, reliability and use of best practices of lung cancer YouTube videos for patient education. Using the search term "lung cancer," the first 50 YouTube videos were identified after applying exclusion criteria and removing duplicates. Two reviewers used a video assessment tool to evaluate 10 videos with minimal discrepancies. The remaining 40 videos were evaluated by one reviewer following a design based research approach. Under half the videos were published within 3 years. Mean video length was 6 min and 12 s. Video publishers were commonly from the USA (70%); were affiliated with a health care facility/ organization (30%), non-profit (26%) or commercial organization (30%); had a physician presenter (46%); were targeted towards patients (68%); and had subtitles (96%). Seventy four percent of videos supported optimal learning by including effective audio and visual channels. Lung cancer epidemiology, risk factors, and definitions (nature of the disease and classification) were among the most common topics covered. Prognostic and diagnostic information was covered less than expected. The reliability of the videos (measured by Modified DISCERN score) varied by presenter type; however, these results should be interpreted cautiously due to the absence of gold standard tools. This study encourages those producing health education videos to continue following best practices for video learning and provides strategies for healthcare providers and patients to support patient education.

Medical Information Delivering Improved Customer Experience: A Guide.

Customer experience (CX) is essential in any business. In the pharmaceutical industry, the Medical Information Contact Center is a customer-facing unit that provides evidence-based, scientifically balanced information to healthcare professionals and patients in response to unsolicited inquiries. The purpose of this paper is to provide analysis and guidance for designing and measuring interactions in the Medical Information Contact Center to facilitate the delivery of a superior and continuously improving CX. Surveys were conducted to establish current trends in CX among a diverse group of CX professionals and members of phactMI, a non-profit collaboration of Medical Information leaders from the pharmaceutical industry. The top three observations from the CX professionals survey centered on establishing a clear CX strategy, use of technology, and frequency of sharing results. Three potential areas for improvement focus on CX strategy, measurements of CX, and sharing of results. An analysis of quality monitoring results of customer interactions in the pharmaceutical industry from Centerfirst, a contact center quality monitoring service provider, was also reviewed. This analysis found a positive correlation between CX and three agent skills: taking the lead, empathy, and strong compliance skills. Based on these results, a CX guide was developed and specifically tailored for the pharmaceutical industry. This tool may be used to help identify, assess, and possibly improve CX.

Determinants Affecting the Health Information Sharing Management and Practice for Patient Referral in Thailand: The Perceptions of Patients and Healthcare Professionals.

Despite the cooperative sharing of health information exchange (HIE), various distinct limitations and barriers are found (i.e., substantial time and resources are being used to achieve health information). This paper investigates the limits of healthcare information sharing policy implementation for patient referral systems in Thailand. Mixed-methods research methodology, both quantitative and qualitative mechanisms, are conducted. The study results present the correlation between the current HIE among the hospitals in patient referral systems and the limitations of implementing the HIE policy, composed of technical, economic, political, and legal barriers. The statistical test reveals that these four main barriers could limit information sharing or impede Thailand's standard healthcare information-sharing policy and practice development. Predominantly, it is further found that there is no standard for data collection and data archiving systems; unclear guidelines, practices, and procedures; and a lack of standard practice due to fragmented administration. Foremost of all, the data ownership of any competent authorities or related regulators could cause any constraints in information sharing (e.g., complexity and processing time). This paper's findings will be beneficial to stakeholders, such as policymakers interested in achieving meaningful use, facilitating the adoption and implementation of HIE at a national level to ensure patients' safety and enhance healthcare quality.

Assessment of reliability and information quality of YouTube videos about root canal treatment after 2016.

BACKGROUND: This study aimed to assess and update the content, reliability, and information quality of content related to root canal treatment (RCTx) on YouTube and evaluate the correlation between each evaluation index. METHODS: YouTube was searched using two terms related to RCTx ("root canal and endodontic treatment"). A total of 240 videos (120 for each search term) were screened. Exclusion criteria were as follows: no sound or visuals, non-English, irrelevant to the search term, longer than 15 min, duplicate, or old (uploaded before 2016). After exclusion, 50 videos of "root canal treatment" and 45 videos of "endodontic treatment" were analyzed. Video length, total number of views, likes, dislikes, comments, and days since upload were recorded using descriptive video data. Viewers' interaction, reliability and information quality of the video, and quality of video content were measured using nondescriptive video data. The interaction index and video power index were used for viewer interactions, and the modified DISCERN index, JAMA criteria, and Global Quality Score were used to assess the reliability and information quality of the video. The quality of the video content was measured using the completeness score. RESULTS: The videos of the "root canal treatment" group had a significantly higher completeness score for the etiology and symptoms (p < 0.05), and videos of the "endodontic treatment" group showed a higher interaction index, completeness score for the procedure (p < 0.05). Videos for dentists had significantly higher completeness scores for the procedure, while videos for laypersons had higher completeness scores for etiology, anatomy, symptoms, and prognosis (p < 0.05). Furthermore, the total completeness score and the interaction index of the videos for laypersons were significantly higher (p < 0.05). The videos uploaded by the university had a significantly higher modified DISCERN index (p = 0.044), and the JAMA score was significantly higher in the commercial group (p = 0.001). CONCLUSIONS: Although the accuracy of videos related to RCTx was higher in videos by universities and professionals, the total completeness of YouTube videos was low regardless of the video source. Therefore, professionals should be responsible for providing more accurate and reliable videos.

Dramatically increased accessibility and decreased cost-per-person impacts are needed for scaling IPM in Africa.

While traditional scaling for integrated pest management (IPM) in Africa requires the movement of expert trainers from village to village, these efforts are often costly, time-inefficient, hampered by distance, and became impossible under COVID-19's movement restrictions (despite tremendously increased public need for IPM-scaling knowledge). One solution to this dilemma is IPM-scaling, usable by a diversity of development actors expending limited or few resources, to deliver critical information to large numbers of people with systems-approach information and communication technologies. This paper describes one such systems-approach scaling platform, Scientific Animations Without Borders, which effectively elicited end-user solution-adoption and decreased unit costs over increasing scales in three African countries during COVID-19. How to scale game-changing IPM insights 'off the shelf' and 'into people's hands in the field' is also discussed.

Assessment of the educational value of endodontic access cavity preparation YouTube video as a learning resource for students.

OBJECTIVE: To evaluate the educational value of YouTube as a learning tool for dental students regarding endodontic access cavity preparation. METHODS AND FINDINGS: YouTube search was made for videos related to endodontic access cavity preparation using specific terms. After exclusions, 41 videos were chosen and assessed for tooth type, video length, days since upload, country of origin, number of views and likes, source of authorship, and viewing rate. To grade the content of videos, a usefulness score with seven elements was developed. Each element was given a score of 0 or 1. Statistical tests were run by using Kruskal-Wallis and Mann-Whitney tests (SPSS Inc, Chicago, IL, USA) at a 5% significance level. The videos received a mean of 181198.5 views with a mean duration of 686.1 seconds. The mean number of "likes" was 1047.8. Almost half of the videos covered content related to molar teeth. Most videos were provided by health care professionals with almost 50% uploaded from India. The mean usefulness score was 4.29 (range: 1-7) and the most discussed elements were description, instruments used, access cavity demonstration, and evaluation criteria. About a quarter of the videos were classified as good, while 46.3% as moderate and 29.3% as poor. Among the content usefulness categories, no difference was found in the video demographics (p>0.05) except "days since upload" (p = 0.018) in which good quality videos were found to have the highest median. Moreover, although insignificant, good videos were found to have the longest duration and lowest number of views, likes, and viewing rate. The mean usefulness score of videos released during the COVID-19 pandemic was lower than that for pre-pandemic videos (p = 0.042), and videos uploaded by academic institutions had a higher mean usefulness score than videos uploaded by health care professionals (p<0.001). CONCLUSIONS: Information on endodontic access cavity preparation is not comprehensive in most of the reviewed YouTube videos and could be of low educational value.

Quality Assessment of YouTube Videos as an Information Source for Testicular Torsion.

Background: Testicular torsion is an acute scrotal disease requiring urgent management, and the COVID-19 pandemic has been demonstrated to lead to poor outcomes for this disease. Presently, many people tend to seek health information via YouTube. This study aims to quantitatively assess the quality of English YouTube video content as an information source of testicular torsion. Methods: In this cross-sectional study, a search was performed with the search term "testicular torsion" on YouTube, and the first 100 videos listed by relevance were selected for our analysis. Duplicate, non-English, videos without audio and surgical videos were excluded. Video features (duration, number of days online, views, likes, comments), source of the video, and author's country were collected. Each video included in the study was assessed using DISCERN and Journal of the American Medical Association (JAMA) Benchmark Criteria. A correlation analysis was performed considering video features, video source, DISCERN scores and JAMA scores. Results: A total of 66 videos were included and analyzed. The most common video content was general information, including etiology, symptoms, and treatment. The majority of videos were from education and training websites (30%), physicians (23%), and independent users (21%). The mean DISCERN and JAMA scores were 36.56 and 2.68, respectively. According to DISCERN, the quality of video uploaded by physicians was relatively high (P < 0.001), and the quality of video uploaded by independent users was relatively low (P < 0.001). The JAMA score had no relevance to the video source (P = 0.813). The correlation between the video features, DISCERN and JAMA scores was controversial by different assessment methods. Conclusions: Despite most of the videos on YouTube being uploaded by medical or education-related authors, the overall quality was poor. The misleading, inaccurate and incomplete information may pose a health risk to the viewers, especially during the COVID-19 pandemic. Much effort needs to be undertaken to improve the quality of health-related videos regarding testicular torsion.

Era uma vez... a gênese e o desenvolvimento da Rede Cedes como experiência de gestão participativa do Ministério do Esporte do Governo Federal ­ 2003/2018 / Once upon a time... the genesis and development of the Cedes Network as a participatory management experience of the Ministry of Sport of the Federal Government - 2003/2018

Objetivou-se analisar a gênese e o desenvolvimento da Ação Programática/Programa Rede CEDES, da Secretaria Nacional de Desenvolvimento de Esporte e Lazer do Ministério do Esporte, visando identificar estratégias de gestão, seus resultados, bem como determinantes socioculturais, econômicos e políticos presentes. Estudo de natureza quali-quantitativa que reuniu pesquisa documental, bibliográfica e informações obtidas por entrevistas realizadas com gestores(as) e pesquisadores(as) participantes da experiência analisada. Identificamos uma experiência de Política Pública de Esporte e Lazer que prezou pela gestão participativa em rede e culminou na criação de Centros de Pesquisas em cada Unidade da Federação, que alcançaram resultados significativos, considerando sua diversidade, convivência entre o estruturado e o não estruturado, articulações, rede de conhecimento, formação e informação.

The aim of this study was to analyze the genesis and development of programmatic action - CEDES Network Program, of the National Secretariat for Sport and Leisure Development of the Ministry of Sport, in order to identify management strategies, their results, as well as sociocultural, economic and political determinants present. A qualitative-quantitative study that gathered documentary, bibliographic and information research obtained from interviews with managers and researchers participating in the analyzed experience. We identified an experience of public policy of sport and leisure that valued participatory management in network and resulted in the creation of Research Centers in each City of the Federation, and that produced significant results, considering their diversity, the coexistence between the structured and the unstructured, articulations, knowledge network, training, and information.

Assessment of the quality of information on treatment of keratoconus on YouTube.

PURPOSE: To evaluate the reliability, quality and effectiveness of YouTube videos addressing treatment of keratoconus. METHODS: This is a retrospective, cross-sectional and register-based study. A YouTube search was performed using the keyword treatment of keratoconus, and the first 100 videos that came out were included in the study. The numbers of views, likes, dislikes, comments, daily viewing rate (number of views per day), uploaded source (physicians, public or private institution, health channel or patients), country of origin, video type (patient experience, scholarly information), and described treatment technique (contact lens, corneal cross-linking, intrastromal corneal ring, topography-guided photorefractive keratectomy, keratoplasty) were evaluated for all videos. They were also evaluated regarding their DISCERN, Journal of the American Medical Association (JAMA), global quality score (GQS) and usefulness score by two independent ophthalmologists. RESULTS: Of the top 100 videos, 83 videos met the criteria. The mean DISCERN, JAMA, GQS and usefulness score were 42.92 ± 18.14, 2.7 ± 0.73, 3.07 ± 1.25 and 2.99 ± 1.44, respectively. Of the 83 videos, 35(42.2%) had been uploaded by physicians, 19(22.9%) by patients, 15(18.1%) by health channel, and 14(16.9%) by institutions/private health institutions. In the correlation analysis, the four scoring systems showed a statistically significant and strong positive correlation with each other (p < 0.001). In addition, viewing rate DISCERN, GQS, usefulness scores, number of likes, dislikes and comments showed a statistically significant positive correlation. CONCLUSION: The content of YouTube videos regarding treatment of keratoconus is of generally good quality and is educational for patients. Increasing the number of videos uploaded by healthcare professionals will increase the quality, reliability and informative features of the videos.

A quality assessment of YouTube content on shoulder instability.

OBJECTIVES: The Internet is a widely used resource for patients seeking health information, yet little editing or regulations are imposed on posted material. We sought to assess the quality and accuracy of information presented on shoulder instability on the online video platform YouTube. We hypothesize that YouTube videos concerning shoulder instability will be of little quality, accuracy, and reliability. METHODS: The first 50 YouTube videos resulting from the keyword query 'shoulder instability' were analyzed. The Journal of American Medical Association (JAMA) benchmark criteria (score range, 0-4) was used to assess video accuracy and reliability, and the Global Quality Score (GQS; score range, 0-5) was used to assess the quality of the video's educational content along with a generated Shoulder-Specific Score (SSS). RESULTS: The 50 videos observed collectively had 5,007,486 views, with the mean number of views being 100,149.72 ± 227,218.04. Of all videos observed, 32% were from a medical source and 56% had content relating to pathology information. The mean JAMA score was 2.84 ± 0.74, with the highest scores coming from academic sources. The mean GQS and SSS scores were 2.68 ± 0.84 and 5.30 ± 3.78. The mean GQS score was highest in videos from medical sources (3.3 ± 0.8) and videos about surgical technique/approach (3.2 ± 1.1). Advertisements were negative predictors of the JAMA score (ß = -0.324, P = 0.014), and academic (ß = 0.322, P = 0.015) and physician sources (ß = 0.356, P = 0.008) were positive predictors. CONCLUSION: YouTube videos on shoulder instability are of low quality and accuracy and are not reliable. Care providers should be aware of the overall low quality of information available on YouTube regarding shoulder instability.

Self-reporting data assets and their representation in the pharmaceutical industry.

Standardizing data is crucial for preserving and exchanging scientific information. In particular, recording the context in which data were created ensures that information remains findable, accessible, interoperable, and reusable. Here, we introduce the concept of self-reporting data assets (SRDAs), which preserve data and contextual information. SRDAs are an abstract concept, which requires a suitable data format for implementation. Four promising data formats or languages are popularly used to represent data in pharma: JCAMP-DX, JSON, AnIML, and, more recently, the Allotrope Data Format (ADF). Here, we evaluate these four options in common use cases within the pharmaceutical industry using multiple criteria. The evaluation shows that ADF is the most suitable format for the implementation of SRDAs.

Evaluating the Balance Between Privacy and Access in Digital Information Sharing.

OBJECTIVES: Access to personal health records in an ICU by persons involved in the patient's care (referred to broadly as "family members" below) has the potential to increase engagement and reduce the negative psychologic sequelae of such hospitalizations. Currently, little is known about patient preferences for information sharing with a designated family member in the ICU. We sought to understand the information-sharing preferences of former ICU patients and their family members and to identify predictors of information-sharing preferences. DESIGN: We performed an internet survey that was developed by a broad, multidisciplinary team of stakeholders. Formal pilot testing of the survey was conducted prior to internet survey administration to study subjects. SETTING: Internet survey. SUBJECTS: Subjects included English-speaking adults who had an ICU experience or a family member with ICU experience between 2013 and 2016. We used panel sampling to ensure an ethnically representative sample of the U.S. population. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: One thousand five hundred twenty surveys were submitted, and 1,470 were included in analysis. The majority of respondents (93.6%) stated that they would want to share present and past medical history, either all or that related to their ICU stay, with a designated family member of their choosing. The majority (79%) would also want their designated family member to be able to access that information from a home computer. Although most respondents preferred to share all types of information, they indicated varying levels of willingness to share specific types of more sensitive information. Information-sharing preferences did not differ by age, sex, ethnicity, or type of prior experience in the ICU (i.e., patient or family member). CONCLUSIONS: In the context of an ICU admission, sharing personal health information with a person of the patient's choosing appears desirable for most patients and family members. Policies and implementation of regulations should take this into consideration.

A health literacy analysis of the consumer-oriented COVID-19 information produced by ten state health departments.

OBJECTIVE: The COVID-19 pandemic highlights the public's need for quality health information that is understandable. This study aimed to identify (1) the extent to which COVID-19 messaging by state public health departments is understandable, actionable, and clear; (2) whether materials produced by public health departments are easily readable; (3) relationships between material type and understandability, actionability, clarity, and reading grade level; and (4) potential strategies to improve public health messaging around COVID-19. METHODS: Based on US Centers for Disease Control and Prevention statistics from June 30, 2020, we identified the ten states with the most COVID-19 cases and selected forty-two materials (i.e., webpages, infographics, and videos) related to COVID-19 prevention according to predefined eligibility criteria. We applied three validated health literacy tools (i.e., Patient Education Materials Assessment Tool, CDC Clear Communication Index, and Flesch-Kincaid Grade Level) to assess material understandability, actionability, clarity, and readability. We also analyzed correlations between scores on the three health literacy tools and material types. RESULTS: Overall, COVID-19 materials had high understandability and actionability but could be improved in terms of clarity and readability. Material type was significantly correlated with understandability, actionability, and clarity. Infographics and videos received higher scores on all tools. CONCLUSIONS: Based on our findings, we recommend public health entities apply a combination of these tools when developing health information materials to improve their understandability, actionability, and clarity. We also recommend using infographics and videos when possible, taking a human-centered approach to information design, and providing multiple modes and platforms for information delivery.