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Bioinformatics and data science research have boundless potential across Africa due to its high levels of genetic diversity and disproportionate burden of infectious diseases, including malaria, tuberculosis, HIV and AIDS, Ebola virus disease, and Lassa fever. This work lays out an incremental approach for reaching underserved countries in bioinformatics and data science research through a progression of capacity building, training, and research efforts. Two global health informatics training programs sponsored by the Fogarty International Center (FIC) were carried out at the University of Sciences, Techniques and Technologies of Bamako, Mali (USTTB) between 1999 and 2011. Together with capacity building efforts through the West Africa International Centers of Excellence in Malaria Research (ICEMR), this progress laid the groundwork for a bioinformatics and data science training program launched at USTTB as part of the Human Heredity and Health in Africa (H3Africa) initiative. Prior to the global health informatics training, its trainees published first or second authorship and third or higher authorship manuscripts at rates of 0.40 and 0.10 per year, respectively. Following the training, these rates increased to 0.70 and 1.23 per year, respectively, which was a statistically significant increase (p < 0.001). The bioinformatics and data science training program at USTTB commenced in 2017 focusing on student, faculty, and curriculum tiers of enhancement. The program’s sustainable measures included institutional support for core elements, university tuition and fees, resource sharing and coordination with local research projects and companion training programs, increased student and faculty publication rates, and increased research proposal submissions. Challenges reliance of high-speed bandwidth availability on short-term funding, lack of a discounted software portal for basic software applications, protracted application processes for United States visas, lack of industry job positions, and low publication rates in the areas of bioinformatics and data science. Long-term, incremental processes are necessary for engaging historically underserved countries in bioinformatics and data science research. The multi-tiered enhancement approach laid out here provides a platform for generating bioinformatics and data science technicians, teachers, researchers, and program managers. Increased literature on bioinformatics and data science training approaches and progress is needed to provide a framework for establishing benchmarks on the topics.

Purpose: Digitalization plays a critical role and is beginning to impact every part of the patient journey, from drug discovery and data collection to treatment and patient-reported outcomes. We aimed to evaluate the status quo and future directions of digital medicine in the specialty of gynecology and obstetrics in Germany. Methods: An anonymous questionnaire was distributed via the German Society of Gynecology and Obstetrics newsletter in December 2022. The questionnaire covered the domains baseline demographic information, telemedicine, digital health applications (DIGAs), and future expectations. Results: In all, 91 participants completed the survey. Median age was 34 years; 67.4% (60 of 89) were female and 32.6% (29 of 89) were male. About 10% (9 of 88) have prescribed DIGAs to date and 14% (12 of 86) offer telemedical appointments. Among those who do not use digital medicine, very few plan to do so in the near future. Reasons include missing software interfaces, lack of time to try out new things, lack of knowledge, lack of monetary compensation (66.3%), and employee concerns. A majority agreed that digitalization will help to save time and improve patient care and that intelligent algorithms will aid clinicians in providing patient care to women. Conclusions: The status quo and future directions of digital medicine in gynecology and obstetrics in Germany are characterized by contradicting expectations regarding the benefits of digital medicine and its actual implementation in clinical routine. This represents an important call to action to meet the requirements of modern patient care. [ABSTRACT FROM AUTHOR]

Genomic information is increasingly used to inform medical treatments and manage future disease risks. However, any personal and societal gains must be carefully balanced against the risk to individuals contributing their genomic data. Expanding our understanding of actionable genomic insights requires researchers to access large global datasets to capture the complexity of genomic contribution to diseases. Similarly, clinicians need efficient access to a patient's genome as well as population-representative historical records for evidence-based decisions. Both researchers and clinicians hence rely on participants to consent to the use of their genomic data, which in turn requires trust in the professional and ethical handling of this information. Here, we review existing and emerging solutions for secure and effective genomic information management, including storage, encryption, consent, and authorization that are needed to build participant trust. We discuss recent innovations in cloud computing, quantum-computing-proof encryption, and self-sovereign identity. These innovations can augment key developments from within the genomics community, notably GA4GH Passports and the Crypt4GH file container standard. We also explore how decentralized storage as well as the digital consenting process can offer culturally acceptable processes to encourage data contributions from ethnic minorities. We conclude that the individual and their right for self-determination needs to be put at the center of any genomics framework, because only on an individual level can the received benefits be accurately balanced against the risk of exposing private information. [ABSTRACT FROM AUTHOR]

The article provides information about the subscription details and policies of the European Journal of Cardiovascular Nursing, including subscription rates, payment methods, contact information, environmental and ethical policies, permissions, advertising, instructions for authors, and disclaimers regarding drug names and opinions expressed in the journal.

BackgroundMost electronic data capture (EDC) and electronic data management (EDM) systems developed to collect and store clinical data from participants recruited into studies are based on generic entity-attribute-value (EAV) database schemas which enable rapid and flexible deployment in a range of study designs. The drawback to such schemas is that they are cumbersome to query with structured query language (SQL). The problem increases when researchers involved in multiple studies use multiple electronic data capture and management systems each with variation on the EAV schema. ObjectiveThe aim of this study is to develop a generic application which allows easy and rapid exploration of data and metadata stored under EAV schemas that are organized into a survey format (questionnaires/events, questions, values), in other words, the Clinical Data Interchange Standards Consortium (CDISC) Observational Data Model (ODM). MethodsCohortExplorer is written in Perl programming language and uses the concept of SQL abstract which allows the SQL query to be treated like a hash (key-value pairs). ResultsWe have developed a tool, CohortExplorer, which once configured for a EAV system will "plug-n-play" with EAV schemas, enabling the easy construction of complex queries through an abstracted interface. To demonstrate the utility of the CohortExplorer system, we show how it can be used with the popular EAV based frameworks; Opal (OBiBa) and REDCap. ConclusionsThe application is available under a GPL-3+ license at the CPAN website. Currently the application only provides datasource application programming interfaces (APIs) for Opal and REDCap. In the future the application will be available with datasource APIs for all major electronic data capture and management systems such as OpenClinica and LabKey. At present the application is only compatible with EAV systems where the metadata is organized into surveys, questionnaires and events. Further work is needed to make the application compatible with EAV schemas where the metadata is organized into hierarchies such as Informatics for Integrating Biology & the Bedside (i2b2). A video tutorial demonstrating the application setup, datasource configuration, and search features is available on YouTube. The application source code is available at the GitHub website and the users are encouraged to suggest new features and contribute to the development of APIs for new EAV systems.

Accelerating insight into the relation between brain and behavior entails conducting small and large-scale research endeavors that lead to reproducible results. Consensus is emerging between funding agencies, publishers, and the research community that data sharing is a fundamental requirement to ensure all such endeavors foster data reuse and fuel reproducible discoveries. Funding agency and publisher mandates to share data are bolstered by a growing number of data sharing efforts that demonstrate how information technologies can enable meaningful data reuse. Neuroinformatics evaluates scientific needs and develops solutions to facilitate the use of data across the cognitive and neurosciences. For example, electronic data capture and management tools designed to facilitate human neurocognitive research can decrease the setup time of studies, improve quality control, and streamline the process of harmonizing, curating, and sharing data across data repositories. In this article we outline the advantages and disadvantages of adopting software applications that support these features by reviewing the tools available and then presenting two contrasting neuroimaging study scenarios in the context of conducting a cross-sectional and a multisite longitudinal study. [ABSTRACT FROM AUTHOR]

The last decade has seen a massive growth in data for cancer research, with high-throughput technologies joining clinical trials as major drivers of informatics needs. These data provide opportunities for developing new cancer treatments, but also major challenges for informatics, and we summarize the systems needed and potential issues arising in addressing these challenges. Integrating these data into the research enterprise will require investments in (1) data capture and management, (2) data analysis, (3) data integration standards, (4) visualization tools, and (5) methods for integration with other enterprise systems. [ABSTRACT FROM AUTHOR]

This paper considers the shift towards relationship marketing principles and the implementation of CRM in the retail financial services sector. Many players offering personal banking and related products have now 'bought in' to the concepts behind relationship marketing, and are investing heavily (particularly in new information technology) to enhance customer relationships and improve retention rates. This trend is considered from the perspective of an organisation that is one of those leading the change. An in-depth case study reveals the progress made in recent years towards the company's goals, focusing especially on the introduction of new systems and moves to enhance customer data. However, the analysis also suggests that major challenges remain if the benefits of CRM are to be fully realised. Issues involving the structure of the organisation and its approach to a range of staff issues such as recruitment and training are of particular concerns for the implementation of CRM principles. [ABSTRACT FROM AUTHOR]

Presents the proceedings of the bioengineering symposium sponsored by the U.S. National Institutes of Health which was held on February 27-28, 1998. Keynote speech of Senator Bill First; Formation of the Bioengineering Consortium; Medical applications of bioengineering.

An introduction is presented in which the editors discuss various reports published within the issue including data management systems building on institutional level data capture, specific methods for data collection and key challenges to electronic data capture in neuroimaging for data sharing.

Background: Many Canadian adolescents and young adults with mental health problems face delayed detection, long waiting lists, poorly accessible services, care of inconsistent quality and abrupt or absent inter-service transitions. To address these issues, ACCESS Open Minds, a multi-stakeholder network, is implementing and systematically evaluating a transformation of mental health services for youth aged 11 to 25 at 14 sites across Canada. The transformation plan has five key foci: early identification, rapid access, appropriate care, the elimination of age-based transitions between services, and the engagement of youth and families. Methods: The ACCESS Open Minds Research Protocol has multiple components including a minimum evaluation protocol and a stepped-wedge cluster randomized trial, that are detailed in this paper. Additional components include qualitative methods and cost-effectiveness analyses. The services transformation is being evaluated at all sites via a minimum evaluation protocol. Six sites are participating in the stepped-wedge trial whereby the intervention (a service transformation along the key foci) was rolled out in three waves, each commencing six months apart. Two sites, one high-population and one low-population, were randomly assigned to each of the three waves, i.e., randomization was stratified by population size. Our primary hypotheses pertain to increased referral numbers, and reduced wait times to initial assessment and to the commencement of appropriate care. Secondary hypotheses pertain to simplified pathways to care; improved clinical, functional and subjective outcomes; and increased satisfaction among youth and families. Quantitative measures addressing these hypotheses are being used to determine the effectiveness of the intervention. Discussion: Data from our overall research strategy will help test the effectiveness of the ACCESS Open Minds transformation, refine it further, and inform its scale-up. The process by which our research strategy was developed has implications for the practice of research itself in that it highlights the need to actively engage all stakeholder groups and address unique considerations in designing evaluations of complex healthcare interventions in multiple, diverse contexts. Our approach will generate both concrete evidence and nuanced insights, including about the challenges of conducting research in real-world settings. More such innovative approaches are needed to advance youth mental health services research. Trial registration number: Clinicaltrials.gov, ISRCTN23349893 (Retrospectively registered: 16/02/2017). [ABSTRACT FROM AUTHOR]

The article focuses on a CenterWatch study of investigative sites which are being flooded with a growing number of eClinical technologies. Topics discussed include the opposite effect of technology solutions implemented at sites, like the additional work it creates, the use of electronic data capture (EDC) and electronic case report form (eCRF) technologies by sites, and the need to rethink the approach and to develop investigative site operating requirements and experience.