From Fragmentation to Open Access: Building an Open Data Portal for Health Data Dissemination.

Open data is defined as data that can be used and redistributed by anyone with minimal or no restrictions. A design science research methodology was applied to the development of an open data portal for theMinistry of Health Sri Lanka (MoH) to share national datasets. Following requirement gathering and literature review, the open data portal was developed using open-source software and implemented at the MoH Sri Lanka. Fifty datasets obtained from the MoH were categorised and published in the open data portal. However, several barriers cast doubt on the long-term feasibility of the open data portal project.

Recommendations for developing accessible patient information leaflets for clinical trials to address English language literacy as a barrier to research participation.

BACKGROUND: Low English language literacy is a common barrier to participation in clinical trials. Patient information leaflets (PILs) used in clinical trials are often lengthy, complex and have poor readability; this is a persistent and prevalent problem common to trials across the world. Simplifying the information provided in PILs can lead to improved understanding, comprehension and knowledge. The aim of this project was to develop recommendations for developing accessible PILs for clinical trials through a literature review of published and grey literature and co-working with marginalised communities, patients, and health and social care charities. METHODS: A literature review of MEDLINE, Embase and online resources was conducted, and recommendations for developing accessible PILs were extracted from eligible published and grey literature. Grey literature which contained insights into more inclusive forms of communication was also identified and summarised. Meetings were held with two racially marginalised community groups, two groups involving autistic adults and/or adults with learning difficulties and a patient advisory group. Examples of accessible PILs were shared and discussions held about the content and format of the PILs and suggestions for changes/improvements. National Voices, a coalition of health and social care charities in England, held a national online workshop with charities and lived experience partners. Recommendations identified from the multiple sources were coded, collated and refined to develop an overarching framework of recommendations. RESULTS: The framework consists of 74 recommendations for developing accessible PILs for clinical trials. Recommendations cover the five topics of formatting, information presentation, writing style, content and accessibility. CONCLUSIONS: This project has developed a comprehensive framework of recommendations to guide researchers in the development of accessible PILs for clinical trials. Findings from previous research and from co-working with marginalised communities, patients and health and social care charities were collated to ensure that a diverse range of voices and experiences informed the framework. These recommendations aim to support researchers to develop better study information to reduce English language literacy as a barrier to participation in clinical trials.

Mediating Effects of Information Access on Internet Use and Multidimensional Health Among Middle-Aged and Older Adults: Nationwide Cross-Sectional Study.

BACKGROUND: With the exacerbation of population aging, the health issues of middle-aged and older adults have increasingly become a focus of attention. The widespread use of the internet has created conditions for promoting the health of this demographic. However, little is known about the effects of information access in promoting the relationship between internet use and the health of middle-aged and older adults. OBJECTIVE: This study aims to examine the relationship between internet use and multidimensional health in middle-aged and older adults, as well as the mediating effect of information access. Moreover, this study will explore the relationship between other dimensions of internet use (purposes and frequency) and health. METHODS: Data were sourced from the China General Social Survey conducted in 2018. Health outcomes, including self-rated, physical, and mental health, were assessed using the 5-level self-rated health scale, the 5-level basic activities of daily living scale, and the 5-level depression scale, respectively. The ordinal logistic regression model was used to examine the relationship between internet use and health among middle-aged and older adults. Additionally, the Karlson-Holm-Breen decomposition method was used to examine the mediation effect of information access. To address endogeneity issues, the two-stage least squares approach was applied. RESULTS: In our sample, nearly half (n=3036, 46.3%) of the respondents use the internet. Regression analyses revealed that internet use was positively associated with self-rated health (odds ratio [OR] 1.55, 95% CI 1.39-1.74; P<.001), physical health (OR 1.39, 95% CI 1.25-1.56; P<.001), and mental health (OR 1.33, 95% CI 1.19-1.49; P<.001) of middle-aged and older adults. Various dimensions of internet use positively contribute to health. In addition, information access significantly mediated the relationship between internet use and self-rated health (ß=.28, 95% CI 0.23-0.32), physical health (ß=.40, 95% CI 0.35-0.45), and mental health (ß=.16, 95% CI 0.11-0.20). Furthermore, there were significant differences in the relationship between internet use and health among advantaged and disadvantaged groups. CONCLUSIONS: The study showed that different dimensions of internet use are associated with better self-rated health, better physical health, and better mental health in middle-aged and older adults. Information access mediates the relationship between internet use and health. This result emphasizes the significance of promoting internet access as a means to enhance the health of middle-aged and older adults in China.

Data access arrangements in genomic research consortia.

One of the most common terms that is used to describe entities responsible for sharing genomic data for research purposes is 'genomic research consortium'. However, there is a lack of clarity around the language used by consortia to describe their data sharing arrangements. Calls have been made for more uniform terminology. This article reports on a review of the genomic research consortium literature illustrating a wide diversity in the language that has been used over time to describe the access arrangements of these entities. The second component of this research involved an examination of publicly available information from a dataset of 98 consortia. This analysis further illustrates the wide diversity in the access arrangements adopted by genomic research consortia. A total of 12 different access arrangements were identified, including four simple forms (open, consortium, managed and registered access) and eight more complex tiered forms (for example, a combination of consortium, managed and open access). The majority of consortia utilised some form of tiered access, often following the policy requirements of funders like the US National Institutes of Health and the UK Wellcome Trust. It was not always easy to precisely identify the access arrangements of individual consortia. Greater consistency, clarity and transparency is likely to be of benefit to donors, depositors and accessors alike. More work needs to be done to achieve this end.

HPV Vaccination Information Access, Needs, and Preferences Among Black and Hispanic Mothers.

HPV-associated cancer disparities disproportionately affect Black/African American and Hispanic individuals in the U.S. HPV vaccination, which can prevent many HPV-associated cancers, should be clearly recommended by pediatricians to parents of adolescents aged 9-12, yet uptake and completion remain lower than other adolescent vaccinations. We used the Structural Influence Model of Health Communication to explore communication inequalities from interviews with 19 Black and Hispanic mothers of adolescents. We identified HPV vaccination information seeking behaviors, media use, and preferred channels to address information needs. This study provides insights into how mothers' nativity and ethno-racial identity influenced how they accessed and processed information from various sources. Preferences for digital and community-based strategies to address information gaps and hesitancy concerns are also presented. Findings suggest future prevention strategies must increase access to accurate information that resonates with NH-Black and Hispanic communities' needs and is disseminated via preferred communication channels to maximize the effects of multi-level interventions promoting HPV vaccination among communities experiencing disparities.

Empowering Research With the American Heart Association Get With The Guidelines Registries Through Integration of a Database and Research Tools.

BACKGROUND: The American Heart Association's Get With The Guidelines (GWTG) has emerged as a vital resource in advancing the standards and practices of inpatient care across stroke, heart failure, coronary artery disease, atrial fibrillation, and resuscitation focus areas. The GWTG registry data have also created new opportunities for secondary use of real-world clinical data in biomedical research. Our goal was to implement a scalable database with an integrated user interface (UI) to improve GWTG data management and accessibility. METHODS: The curation of registry data begins by going through a data processing and quality control pipeline programmed in Python. This pipeline includes data cleaning and record exclusion, variable derivation and unit harmonization, limited data set preparation, and documentation generation of the registry data. The database was built using PostgreSQL, and integrations between the database and the UI were built using the Django Web Framework in Python. Smaller subsets of data were created using SQLite database files for distribution purposes. Use cases of these tools are provided in the article. RESULTS: We implemented an automated data curation pipeline, centralized database, and UI application for the American Heart Association GWTG registry data. The database and the UI are accessible through a Precision Medicine Platform workspace. As of March 2024, the database contains over 13.2 million cleaned GWTG patient records. The SQLite subsets benefit researchers by optimizing data extraction and manipulation using Structured Query Language. The UI improves accessibility for nontechnical researchers by presenting data in a user-friendly tabular format with intuitive filtering options. CONCLUSIONS: With the implementation of the GWTG database and UI application, we addressed data management and accessibility concerns despite its growing scale. We have launched tools to provide streamlined access and accessibility of GWTG registry data to all researchers, regardless of familiarity or experience in coding.

Public Availability of Data Management and Analysis Scripts of Studies Conducted on Open-Access Intensive Care Databases.

Intensive care units (ICUs) provide care for critical patients at high risk of morbidity and mortality, and require continuous monitoring of clinical, biological and, imaging parameters. Collaborative ventures have enabled the emergence of large open access databases for the secondary use of Electronic Health Records (EHRs). The objective of this work was to evaluate the availability of scripts and datasets in publications based on ICU open-access databases. We included 910 original articles based on four ICU open-access databases (Amsterdam University Medical Centers Database, eICU Collaborative Research Database, High time resolution ICU dataset, and Medical Information Mart for Intensive Care). The majority of the studies did not provide their data management scripts (n=839, 92.9%), neither the analysis script (n=843, 93.4%) in the article. Attempts to contact the 845 corresponding authors in question resulted in 89.11% (n=753) of our e-mail requests going unanswered over a two-month period. We received 51 automated messages (55.43%) indicating that emails have not been delivered, while 6 messages (6.52%) redirected to alternative email addresses. Only 20 corresponding authors (18.18%) answered, finally providing the requested materials. Despite scientific journals recommendations to share materials, our study unveils the absence of crucial components for the replication of studies by other research teams.

The value of decentralized clinical trials: Inclusion, accessibility, and innovation.

In this Review, we explore the transformative potential of decentralized clinical trials (DCTs) in addressing the limitations of traditional randomized controlled trials (RCTs). We highlight the merits of DCTs fostering greater inclusivity, efficiency, and adaptability. We emphasize the challenges of RCTs, including limited participant diversity and logistical barriers, geographical constraints, and mistrust in research institutions, showing how DCTs are preferred in addressing these challenges by utilizing remote digital technologies and community providers to enable broader, more inclusive participation. Furthermore, we underscore the potential of DCTs for democratizing clinical research. We also stress the importance of addressing unresolved challenges, including data security and privacy, remote patient monitoring, and regulatory variations. Research is needed to devise standardized protocols to streamline DCT processes, explore its long-term impacts on patient outcomes, and overcome challenges through equitable stakeholder engagement.

Evaluation of NCI-Designated Cancer Center and Comprehensive Cancer Center Survivorship-Focused Websites: Information Provided and Accessibility.

BACKGROUND: Individuals with a history of cancer increasingly seek health information from online resources, including NCI-designated Cancer Center websites. Centers receive NCI designation because they provide excellent care and engage in cutting-edge research. However, the information presented on these webpages and their accessibility is unknown. An evaluation of the survivorship-focused webpages from NCI-designated Cancer Centers is needed to assess survivorship information and accessibility of these webpages. METHODS: We conducted an evaluation of the survivorship-focused webpages from 64 NCI-designated Cancer Centers. We evaluated where survivorship-focused webpages were housed, if there was a survivorship clinic or program, target audience of the webpage, how cancer survivor was defined, contact methods, and available resources. Accessibility outcomes included readability, font type, font size, color scheme, and alternative text (alt text) descriptors. An artificial intelligence (AI) audit was conducted to assess if the webpage was compliant with national accessibility guidelines. RESULTS: Most cancer centers had a survivorship-focused webpage, with 72% located on the cancer center's website and 28% on a health system website. Survivorship information available varied considerably and was often lacking in detail. Although three-quarters of webpages targeted patients only, variable definitions of cancer survivor were observed. Accessibility issues identified included inconsistent use of alt text descriptors, font size smaller than 15 points, and color schemes without adequate contrast. The average reading-level of information presented was above 12th grade. Only 9% of webpages were compliant with online accessibility guidelines; 72% semicompliant and 21% were noncompliant. CONCLUSIONS: Information presented on NCI-designated Cancer Center survivorship-focused webpages was inconsistent, often lacking, and inaccessible. NCI-designated Cancer Centers are role models for cancer research in the United States and have an obligation to provide survivorship information. Changes to content and website design are needed to provide better information for individuals seeking resources and health information relative to their cancer and care.

The Case for Access to Data Monitoring Committee Charters.

AbstractClinical trials investigating novel or high-risk interventions often use data monitoring committees (DMCs) to ensure that the participants' best interests are safeguarded. The typical DMC charter describes procedures by which the DMC operates, including important details concerning organizational structure, membership, meeting frequency, statistical monitoring guidelines, and contents of DMC reports for interim review. These charters, however, are not routinely publicly available; in some cases, their access could be important to the interpretation of trial results. We recommend including DMC charters for such trials in ClinicalTrials.gov at the time of trial completion; trial protocols, informed consent documents, and statistical analysis plans are already available in this repository.

Reducing Disparities Through Online Accessibility Information.

This Viewpoint describes the need for more health care organizations to include disability accessibility information on their websites and to improve physical access for patients with disabilities.

Percepción de los estudiantes de cuarto semestre del programa de Instrumentación Quirúrgica de la FUCS sobre la Vitrina de Conocimiento “Be-BienEstar”

La vitrina de conocimiento “BE-BienEstar” se presenta como un recurso libre dispuesto en el Bvs/Ops para el acceso de toda la población, es un espacio de salud mental que ofrece recursos y actividades integrales para promover el bienestar psicosocial y el desarrollo personal, enfocado en proporcionar información clara y herramientas prácticas para la vida diaria, integrando mente, cuerpo y espíritu para crear comunidades saludables y mentalmente fuertes. De ahí la importancia de rescatar la percepción de los estudiantes frente al contenido, acceso, diseño, utilidad e implementación de la vitrina en su vida para su desarrollo personal.

Open Access: Opening or Closing Doors for Junior Faculty?

The Open Access movement has transformed the landscape of medical publishing. Federal regulations regarding Open Access have expanded in the USA, and journals have adapted by offering a variety of Open Access models that range widely in cost and accessibility. For junior faculty with little to no funding, navigating this ever-changing landscape while simultaneously balancing the pressures of publication and promotion may present a particular challenge. Open Access provides the opportunity to amplify the reach and impact of scientific research, yet it often comes at a cost that may not be universally affordable. In this perspective, we discuss the impact of Open Access through the lens of junior faculty in general internal medicine. We describe the potential benefits and pitfalls of Open Access on junior faculty with a focus on research dissemination and cost. Finally, we propose sustainable solutions at the individual and systems-level to help navigate the world of Open Access to promote career growth and development.