Quantifying and contextualizing the impact of bioRxiv preprints through automated social media audience segmentation.

Engagement with scientific manuscripts is frequently facilitated by Twitter and other social media platforms. As such, the demographics of a paper's social media audience provide a wealth of information about how scholarly research is transmitted, consumed, and interpreted by online communities. By paying attention to public perceptions of their publications, scientists can learn whether their research is stimulating positive scholarly and public thought. They can also become aware of potentially negative patterns of interest from groups that misinterpret their work in harmful ways, either willfully or unintentionally, and devise strategies for altering their messaging to mitigate these impacts. In this study, we collected 331,696 Twitter posts referencing 1,800 highly tweeted bioRxiv preprints and leveraged topic modeling to infer the characteristics of various communities engaging with each preprint on Twitter. We agnostically learned the characteristics of these audience sectors from keywords each user's followers provide in their Twitter biographies. We estimate that 96% of the preprints analyzed are dominated by academic audiences on Twitter, suggesting that social media attention does not always correspond to greater public exposure. We further demonstrate how our audience segmentation method can quantify the level of interest from nonspecialist audience sectors such as mental health advocates, dog lovers, video game developers, vegans, bitcoin investors, conspiracy theorists, journalists, religious groups, and political constituencies. Surprisingly, we also found that 10% of the preprints analyzed have sizable (>5%) audience sectors that are associated with right-wing white nationalist communities. Although none of these preprints appear to intentionally espouse any right-wing extremist messages, cases exist in which extremist appropriation comprises more than 50% of the tweets referencing a given preprint. These results present unique opportunities for improving and contextualizing the public discourse surrounding scientific research.

Qualitative analysis of actual Standard for Exchange of Nonclinical Data (SEND) datasets for Data Domains: Proposition from Japan Pharmaceutical Manufacturers Association SEND Taskforce Team on standardization of nonclinical data.

The Standard for Exchange of Nonclinical Data (SEND) has been adopted by the US FDA, which has required pharmaceutical companies who are developing new drugs for the US market to implement SEND. The Japan Pharmaceutical Manufacturers Association (JPMA) SEND Taskforce Team responded to this situation by starting a project to better understand the contents of SEND datasets. The project focused on domains generally included in the SEND domains for single- and repeat-dose general toxicology studies, and surveyed what kind of information are populated in which domains and in what way. The qualitative analysis of the results indicated that variations exist based on whether or not an individual variable was populated and on how the variable was populated. The Taskforce Team recommends reducing variations not only in the SEND datasets but also in the descriptions in the study protocol and/or final study report. Reduction of such variations should lead to higher quality datasets with powerful and increased searchability so that accumulated SEND datasets should become more valuable. These efforts would provide regulatory agencies with easier review of SEND datasets, which contributes to efficient development of new drug candidates.

How phantom databases could contribute to conservation assessments.

Reliable data are needed to produce representative and useful conservation assessments for species. To this end, taxonomists and their unpublished, archived and unused databases-here called phantom databases-have great relevance for assessing the conservation status of species. Taxonomist's phantom databases are usually the result of a review work, and, if made available, they could be used to assess a species conservation status with greater accuracy, allowing for more effective conservation planning. Here we characterise these databases, provide examples of their relevance and recommend solutions to make these phantom databases available for conservation use. Databases of taxonomic and geographic information need not be phantom and could be made openly accessible to encourage their use in conservation activities.

The use of an electronic health record system reduces errors in the National Hip Fracture Database.

AIM: to compare the validity of data submitted from a UK level 1 trauma centre to the National Hip Fracture Database (NHFD) before and after the introduction of an electronic health record system (EHRS). PATIENTS AND METHODS: a total of 3224 records were reviewed from July 2009 to July 2017. 2,133 were submitted between July 2009 and October 2014 and 1,091 between October 2014 and July 2017, representing data submitted before and after the introduction of the EHRS, respectively. Data submitted to the NHFD were scrutinised against locally held data. RESULTS: use of an EHRS was associated with significant reductions in NHFD errors. The operation coding error rate fell significantly from 23.2% (494/2133) to 7.6% (83/1091); P < 0.001. Prior to EHRS introduction, of the 109 deaths recorded in the NHFD, 64 (59%) were incorrect. In the EHRS dataset, all the 112 recorded deaths were correct (P < 0.001). There was no significant difference in the error rate for fracture coding. In the EHRS dataset, after controlling for sample month, entries utilising an operation note template with mandatory fields relevant to NHFD data were more likely to be error free than those not using the template (OR 2.69; 95% CI 1.92-3.78). CONCLUSION: this study highlights a potential benefit of EHR systems, which offer automated data collection for auditing purposes. However, errors in data submitted to the NHFD remain, particularly in cases where an NHFD-specific operation note template is not used. Clinician engagement with new technologies is vital to avoid human error and ensure database integrity.

Building Data and Information Capacity in Environmental Public Health: A Best-Worst Scaling Experiment.

CONTEXT: Environmental public health practitioners rely on information technology (IT) to maintain and improve environmental health. However, current systems have limited capacity. A better understanding of the importance of IT features is needed to enhance data and information capacity. OBJECTIVE: (1) Rank IT features according to the percentage of respondents who rated them as essential to an information management system and (2) quantify the relative importance of a subset of these features using best-worst scaling. DESIGN: Information technology features were initially identified from a previously published systematic review of software evaluation criteria and a list of software options from a private corporation specializing in inspection software. Duplicates and features unrelated to environmental public health were removed. The condensed list was refined by a working group of environmental public health management to a final list of 57 IT features. The essentialness of features was electronically rated by environmental public health managers. Features where 50% to 80% of respondents rated them as essential (n = 26) were subsequently evaluated using best-worst scaling. SETTING: Ontario, Canada. PARTICIPANTS: Environmental public health professionals in local public health. MAIN OUTCOME MEASURE: Importance scores of IT features. RESULTS: The majority of IT features (47/57) were considered essential to an information management system by at least half of the respondents (n = 52). The highest-rated features were delivery to printer, software encryption capability, and software maintenance services. Of the 26 features evaluated in the best-worst scaling exercise, the most important features were orientation to all practice areas, off-line capability, and ability to view past inspection reports and results. CONCLUSIONS: The development of a single, unified environmental public health information management system that fulfills the reporting and functionality needs of system users is recommended. This system should be implemented by all public health units to support data and information capacity in local environmental public health. This study can be used to guide vendor evaluation, negotiation, and selection in local environmental public health, and provides an example of academia-practice partnerships and the use of best-worst scaling in public health research.

Website Redesign: A Case Study.

A library website redesign is a complicated and at times arduous task, requiring many different steps including determining user needs, analyzing past user behavior, examining other websites, defining design preferences, testing, marketing, and launching the site. Many different types of expertise are required over the entire process. Lessons learned from the Norris Medical Library's experience with the redesign effort may be useful to others undertaking a similar project.

Clinical Trials Registration and Results Information Submission. Final rule.

This final rule details the requirements for submitting registration and summary results information, including adverse event information, for specified clinical trials of drug products (including biological products) and device products and for pediatric postmarket surveillances of a device product to ClinicalTrials.gov, the clinical trial registry and results data bank operated by the National Library of Medicine (NLM) of the National Institutes of Health (NIH). This rule provides for the expanded registry and results data bank specified in Title VIII of the Food and Drug Administration Amendments Act of 2007 (FDAAA) to help patients find trials for which they might be eligible, enhance the design of clinical trials and prevent duplication of unsuccessful or unsafe trials, improve the evidence base that informs clinical care, increase the efficiency of drug and device development processes, improve clinical research practice, and build public trust in clinical research. The requirements apply to the responsible party (meaning the sponsor or designated principal investigator) for certain clinical trials of drug products (including biological products) and device products that are regulated by the Food and Drug Administration (FDA) and for pediatric postmarket surveillances of a device product that are ordered by FDA.

Information overload.

A report released last week by the US National Academies makes recommendations for tackling the issues surrounding the era of petabyte science.

Implementation of the National Nursing Quality Report Initiative in Canada: Insights From Pilot Participants.

A qualitative study was undertaken to explore the perceptions and experiences of nurse leaders associated with their participation in the pilot testing of a national nursing database. Interviews with 18 participants were conducted and analyzed using a direct content analysis approach. Three themes emerged including selecting, accessing, and uploading indicators; using indicators and monitoring tools for improvement; and perceiving involvement as a catalyst. Study findings may inform quality improvement efforts in health care organizations.

Comparison of characteristics of international and national databases for rheumatoid arthritis: a systematic literature review.

OBJECTIVES: To evaluate current (inter)national registers and observational cohorts in Europe, and to compare inclusion criteria, aims, collected data, and participation in the European League Against Rheumatism (EULAR) repository. METHOD: We performed a systematic search strategy in six literature databases for rheumatoid arthritis (RA). Publications reporting European (inter)national prospective registers/cohorts including > 200 RA patients with at least half a year of follow-up were selected. RESULTS: In total, 417 articles and abstracts were included from four international databases and 39 national databases/cohorts. International databases were of similar design, frequency of data collection and selection criteria and are mostly initiated to monitor and compare clinical patient care among countries. National databases/cohorts vary in aims and inclusion criteria. Half of the national registers are connected to the EULAR repository of databases. CONCLUSIONS: Our findings indicate that, among researchers, there is little awareness of guidelines to set up registers or cohorts and of the existence of the database collaboration network of EULAR.

Optimisation of vasculitis disease assessments in clinical trials, clinical care and long-term databases.

The systemic vasculitides are a group of rare, chronic, relapsing, but often progressive inflammatory conditions. They are associated with a significant burden of morbidity both due to scarring from the disease itself and as a consequence of treatment with glucocorticoids and other potent immunosuppressive agents. Careful assessment of disease activity is critical to guide appropriate use of these potentially toxic therapies. It is also important to differentiate features of active disease from those attributable to damage, which will not respond to immunosuppression. As these are chronic complex conditions, the impact on a patient's functional ability and quality of life are also important considerations. Given the lack of a reliable biomarker for assessment of disease activity or damage in systemic vasculitis, clinical tools developed and validated for use initially in clinically trials are key outcome measures in the evaluation of these patients. While the conduct of randomised clinical trials in vasculitis has been significantly enhanced by the development and use of validated outcome measures, regular use of validated disease activity and damage measurements as part of routine care offers a structured approach, which can serve as the basis of justifying treatment decisions. The authors review the concepts of clinical assessment tools used in the evaluation of patients with systemic vasculitis in the setting of clinical practice, clinical trials and long term databases with particular emphasis on disease activity, damage, prognosis and function.

The quality of police data on RTC fatalities in India.

BACKGROUND: Police records are the major source of data on road traffic collision (RTC) deaths in India. OBJECTIVE: To examine the utility and quality of police data on RTC deaths available from two sources. METHODS: Police data on RTC deaths available from National Crime Records Bureau (NCRB) and Ministry of Road Transport and Highways (MoRTH) were accessed. The utility of these data for surveillance and consistency of data reported by the two organisations was examined. Data completeness was assessed for India, its six geographic regions and for the mode of travel using cause of death estimates from the Sample Registration System (SRS) and Global Burden of Disease (GBD) as a reference. RESULTS: Data imperative for surveillance including deaths by age and sex for each state, the counterpart vehicle or object and use of safety equipment were not available. The total number of deaths reported by NCRB and MoRTH was similar across states but showed large differences by mode of travel categories. Compared with GBD, completeness of the number of fatalities reported by both sources in 2010 was approximately 50%. Completeness for the geographic regions ranged from 26.4% to 76.4%, using SRS data, in 2001-2003. CONCLUSIONS: This detailed examination of police data on RTC fatalities from two sources has raised several questions about the validity of these data and has highlighted a number of gaps that limit the usefulness of these data for surveillance and informing road safety policies. Unless these are addressed, significant reductions in RTC fatalities cannot be achieved in India.

The evolution of school nursing data indicators in Massachusetts: recommendations for a national data set.

The National Association of School Nurses' research priorities include the recommendation that data reliability, quality, and availability be addressed to advance research in child and school health. However, identifying a national school nursing data set has remained a challenge for school nurses, school nursing leaders, school nurse professional organizations, and state school nurse consultants. While there is much agreement that school nursing data (with associated data integrity) is an incredibly powerful tool for multiple uses, the content of a national data set must be developed. In 1993, recognizing the unique power of data, Massachusetts began addressing the need for consistent school nurse data collection. With more than 20 years' experience--and much experimentation, pilot testing, and system modification--Massachusetts is now ready to share its data collection system and certain key indicators with other states, thus offering a beginning foundation for a national school nursing data set.

Cancer auditing - how accurate are your data?

AIM: Human involvement in the collection and entering of information into a database leads to a degree of error. The aim of this study was to assess the concordance between two individuals blinded from each other who independently collected information on the same set of patients and entered it into a colorectal neoplasia database. METHOD: A colorectal research nurse and a surgeon independently maintained an electronic database on all new patients admitted with colorectal neoplasia under the surgeon over a 5-year period. Twenty-three key endpoints were selected from the database in order to determine the agreement between the two observers. The κ statistic (for nominal and ordinal data) and the concordance correlation coefficient (for interval data) were used to determine the level of agreement between the two data sets. RESULTS: Both observers recorded 432 new referrals during this period. There was only complete concordance between the two databases with respect to the number of new patients and returns to theatre within 30 days. Nonetheless, there was almost perfect concordance between the two data sets for a majority of the endpoints. The most important areas of variance were in the length of stay (κ=0.78), the American Society of Anesthesiology grade (κ=0.41), emergency surgery (κ=0.36), nodal staging (κ=0.54) and time to recurrence (κ=0.77). CONCLUSION: This study highlights a number of important areas of data inaccuracy in a prospective colorectal database. The inaccuracies were due to observer bias, issues of data interpretation, or just difficulty in collecting the information accurately.

Advantages and limitations of using national administrative data on obstetric blood transfusions to estimate the frequency of obstetric hemorrhages.

BACKGROUND: Obstetric hemorrhages are a frequent cause of maternal death all over the world, but are not routinely monitored. Health systems administrative databases could be used for this purpose, but data quality needs to be assessed. OBJECTIVES: Using blood transfusion data recorded in administrative databases to estimate the frequency of obstetric hemorrhages. Research design A population-based study. Subjects Validation sub-sample: all mothers who gave birth in a French region in 2006-07 (35 123 pregnancies). Main study: all mothers who gave birth in France in 2006-07 (1 629 537 pregnancies). METHOD: Linkage and comparison of administrative data on blood transfusions with data from the French blood agency ('gold standard'), and, based on this validation, the construction of a multivariable regression model to correct the number of pregnant women identified as having received a transfusion in the national administrative database. RESULTS: The blood transfusion rate observed in the gold standard was 7.12‰. The sensitivity of the administrative data was estimated at 66.3% and the positive predictive value at 91.3%. The estimated total number of pregnant women who received blood transfusions in France in 2006-07 was 10 941 (6.71‰). CONCLUSIONS: The administrative data, available in most countries, can be used to estimate the frequency of obstetric hemorrhages.

Unique device identification system. Final rule.

The Food and Drug Administration (FDA) is issuing a final rule to establish a system to adequately identify devices through distribution and use. This rule requires the label of medical devices to include a unique device identifier (UDI), except where the rule provides for an exception or alternative placement. The labeler must submit product information concerning devices to FDA's Global Unique Device Identification Database (GUDID), unless subject to an exception or alternative. The system established by this rule requires the label and device package of each medical device to include a UDI and requires that each UDI be provided in a plain-text version and in a form that uses automatic identification and data capture (AIDC) technology. The UDI will be required to be directly marked on the device itself if the device is intended to be used more than once and intended to be reprocessed before each use.

The Croatian national termbank Struna: a new platform for terminological work.

The development of the Croatian Special Field Terminology program (known by its Croatian acronym Struna) began in 2007 as part of an initial coordination project launched at the initiative of the Croatian Standard Language Council, and has since been financed by the Croatian Science Foundation. It is being carried out at the Institute of Croatian Language and Linguistics, which serves as the national coordinator. This paper describes the current design of the e-Struna termbank and explains the adjustments made in the database structure and in the terminographic approach, both to support and reflect the methodological issues concerning interdisciplinary and multidisciplinary work. Based on examples taken from the Croatian anthropological terminology collection special attention is given to two frequently neglected categories of terminological description: context and note.

Development of the Australasian vascular surgical audit.

OBJECTIVE: The purpose of this study was to describe the development of the Australasian Vascular Audit that was created to unify audit activities under the umbrella of the Australian and New Zealand Society for Vascular Surgery as a Web-based application. METHODS: Constitutional change in late 2008 deemed participation in this audit compulsory for Society members. The Web-based application was developed and tested during 2009. Data for all open vascular surgery and for all endovascular procedures are collected at two points in the admission episode: at the time of operation and at discharge, and entered into the application. Data are analyzed to produce risk-adjusted outcomes. An algorithm has been developed to deal with outliers according to natural justice and to comply with the requirements of regulatory bodies. The Audit is protected by legislated privilege and is officially endorsed and indemnified by the Royal Australasian College of Surgeons. Confidentiality of surgeons and patients alike is ensured by a legally protected coding system and computer encryption system. Validation is by a verification process of 5% of members per year who are randomly selected. The application is completely funded by the Society. RESULTS: Data entry commenced on January 1, 2010. Over 40,000 vascular procedures were entered in the first year. The Audit application allows instantaneous on-line access to individual data and to deidentified group data and specific reports. It also allows real-time instantaneous production of log books for vascular trainees. The Audit has already gained recognition in the Australasian public arena during its first year of operation as an important benchmark of correct professional surgical behavior. Compliance has been extremely high in public hospitals but less so in private hospitals such that only 60% of members received a certificate of complete participation at the end of its first year of operation. CONCLUSION: An Internet-based compulsory audit of complete surgical practice is possible to create and be maintained by a society of surgeons with a membership of just over 200. The 60% compliance rate for complete data entry has created an immediate constitutional challenge for the Society. Future challenges are to improve total participation to an acceptable level and to ensure accurate data entry via a robust validation system.