The Importance of Biodiversity E-infrastructures for Megadiverse Countries.

Addressing the challenges of biodiversity conservation and sustainable development requires global cooperation, support structures, and new governance models to integrate diverse initiatives and achieve massive, open exchange of data, tools, and technology. The traditional paradigm of sharing scientific knowledge through publications is not sufficient to meet contemporary demands that require not only the results but also data, knowledge, and skills to analyze the data. E-infrastructures are key in facilitating access to data and providing the framework for collaboration. Here we discuss the importance of e-infrastructures of public interest and the lack of long-term funding policies. We present the example of Brazil's speciesLink network, an e-infrastructure that provides free and open access to biodiversity primary data and associated tools. SpeciesLink currently integrates 382 datasets from 135 national institutions and 13 institutions from abroad, openly sharing ~7.4 million records, 94% of which are associated to voucher specimens. Just as important as the data is the network of data providers and users. In 2014, more than 95% of its users were from Brazil, demonstrating the importance of local e-infrastructures in enabling and promoting local use of biodiversity data and knowledge. From the outset, speciesLink has been sustained through project-based funding, normally public grants for 2-4-year periods. In between projects, there are short-term crises in trying to keep the system operational, a fact that has also been observed in global biodiversity portals, as well as in social and physical sciences platforms and even in computing services portals. In the last decade, the open access movement propelled the development of many web platforms for sharing data. Adequate policies unfortunately did not follow the same tempo, and now many initiatives may perish.

ZINC: a free tool to discover chemistry for biology.

ZINC is a free public resource for ligand discovery. The database contains over twenty million commercially available molecules in biologically relevant representations that may be downloaded in popular ready-to-dock formats and subsets. The Web site also enables searches by structure, biological activity, physical property, vendor, catalog number, name, and CAS number. Small custom subsets may be created, edited, shared, docked, downloaded, and conveyed to a vendor for purchase. The database is maintained and curated for a high purchasing success rate and is freely available at zinc.docking.org.

Healthy aging and preclinical dementia: the United States-Israel Longitudinal Database project.

This article proposes the establishment of a United States-Israel Longitudinal Database for Healthy Aging and Preclinical Dementia as a prototype model for the eventual creation of an international database. It is envisioned that such a comprehensive international database, as a shared research resource, will provide the foundation for a systems approach to solve the dual public health problems of: (1) Early detection of individuals at an elevated risk of developing Alzheimer's disease, and (2) Developing interventions to delay onset of, or prevent, chronic brain disorders later in life.

E-neuroscience: challenges and triumphs in integrating distributed data from molecules to brains.

Imaging, from magnetic resonance imaging (MRI) to localization of specific macromolecules by microscopies, has been one of the driving forces behind neuroinformatics efforts of the past decade. Many web-accessible resources have been created, ranging from simple data collections to highly structured databases. Although many challenges remain in adapting neuroscience to the new electronic forum envisioned by neuroinformatics proponents, these efforts have succeeded in formalizing the requirements for effective data sharing and data integration across multiple sources. In this perspective, we discuss the importance of spatial systems and ontologies for proper modeling of neuroscience data and their use in a large-scale data integration effort, the Biomedical Informatics Research Network (BIRN).

Data value and care value in the practice of health systems: A case study in Uganda.

In anthropology, interest in how values are created, maintained and changed has been reinvigorated. In this case study, we draw on this literature to interrogate concerns about the relationship between data collection and the delivery of patient care within global health. We followed a pilot study conducted in Kayunga, Uganda that aimed to improve the collection of health systems data in five public health centres. We undertook ethnographic research from July 2015 to September 2016 in health centres, at project workshops, meetings and training sessions. This included three months of observations by three fieldworkers; in-depth interviews with health workers (n = 15) and stakeholders (n = 5); and six focus group discussions with health workers. We observed that measurement, calculation and narrative practices could be assigned care-value or data-value and that the attempt to improve data collection within health facilities transferred 'data-value' into health centres with little consideration among project staff for its impact on care. We document acts of acquiescence and resistance to data-value by health workers. We also describe the rare moments when senior health workers reconciled these two forms of value, and care-value and data-value were enacted simultaneously. In contrast to many anthropological accounts, our analysis suggests that data-value and care-value are not necessarily conflicting. Actors seeking to make changes in health systems must, however, take into account local forms of value and devise health systems interventions that reinforce and enrich existing ethically driven practice.

Tactical increases in operating room block time based on financial data and market growth estimates from data envelopment analysis.

BACKGROUND: Data envelopment analysis (DEA) is an established technique that hospitals and anesthesia groups can use to understand their potential to grow different specialties of inpatient surgery. Often related decisions such as recruitment of new physicians are made promptly. A practical challenge in using DEA in practice for this application has been the time to obtain access to and preprocess discharge data from states. METHODS: A case study is presented to show how results of DEA are linked to financial analysis for purposes of deciding which surgical specialties should be provided more resources and institutional support, including the allocation of additional operating room (OR) block time on a tactical (1 yr) time course. State discharge abstract databases were used to study how to perform and present the DEA using data from websites of the United States' (US) Healthcare Cost and Utilization Project (HCUPNet) and Census Bureau (American FactFinder). RESULTS: DEA was performed without state discharge data by using census data with federal surgical rates adjusted for age and gender. Validity was assessed based on multiple criteria, including: satisfaction of statistical assumptions, face validity of results for hospitals, differentiation between efficient and inefficient hospitals on other measures of how much surgery is done, and correlation of estimates of each hospital's potential to grow the workload of each of eight specialties with estimates obtained using unrelated statistical methods. CONCLUSIONS: A hospital can choose specialties to target for expanded OR capacity based on its financial data, its caseloads for specific specialties, the caseloads from hospitals previously examined, and surgical rates from federal census data.

Economic implications of treatment guidelines for congestive heart failure.

Congestive heart failure (CHF) is the most common cause of cardiovascular hospital admission. A significant proportion of the costs of CHF is due to hospitalizations. The present study evaluated the economic impact of a modest increase in the use of angiotensin-converting enzyme (ACE) inhibitors, beta-blockers, spironolactone and digoxin on CHF hospitalizations. Patients with CHF were identified through the Canadian Institute for Health Information (CIHI) database. The efficacy of ACE inhibitors, beta-blockers, spironolactone and digoxin in the first year of treatment were retrieved from the Survival and Ventricular Enlargement (SAVE) trial, a meta-analysis, the Randomized Aldactone Evaluation Study (RALES) and the Digitalis Investigation Group (DIG) trial, respectively. Cost of CHF hospitalization was based on the National List of Provincial Costs. Costs of drug treatment were based on the 2002 Alberta Health and Wellness Drug Benefit list. Physician visits for drug titration were also included in the model. A total of 85,679 patients with CHF were identified with a total of 106,130 hospital discharges. A 10% increase in use of ACE inhibitors, beta-blockers, spironolactone and digoxin would incur in a total cost due to avoidable hospital admissions of 0.4 million dollars, 1.3 million dollars, 3.7 million dollars and 1.2 million dollars, respectively. Similarly, the costs of drug treatment would be 2.2 million dollars, 1.3 million dollars, 0.3 million dollars and 0.5 million dollars, respectively. An increase in the use of the above medications would save 6.6 million dollars due to avoidable hospital admissions. The total cost of drug treatment was 4.3 million dollars, giving a net savings of 2.3 million dollars in the first year. The implementation of evidence-based therapy for CHF treatment is not only clinically efficacious, but also economically attractive.

Implementation and integration of regional health care data networks in the Hellenic National Health Service.

BACKGROUND: Modern health care is provided with close cooperation among many different institutions and professionals, using their specialized expertise in a common effort to deliver best-quality and, at the same time, cost-effective services. Within this context of the growing need for information exchange, the demand for realization of data networks interconnecting various health care institutions at a regional level, as well as a national level, has become a practical necessity. OBJECTIVES: To present the technical solution that is under consideration for implementing and interconnecting regional health care data networks in the Hellenic National Health System. METHODS: The most critical requirements for deploying such a regional health care data network were identified as: fast implementation, security, quality of service, availability, performance, and technical support. RESULTS: The solution proposed is the use of proper virtual private network technologies for implementing functionally-interconnected regional health care data networks. CONCLUSIONS: The regional health care data network is considered to be a critical infrastructure for further development and penetration of information and communication technologies in the Hellenic National Health System. Therefore, a technical approach was planned, in order to have a fast cost-effective implementation, conforming to certain specifications.

DataFoundry: information management for scientific data.

Data warehouses and data marts have been successfully applied to a multitude of commercial business applications. They have proven to be invaluable tools by integrating information from distributed, heterogeneous sources and summarizing this data for use throughout the enterprise. Although the need for information dissemination is as vital in science as in business, working warehouses in this community are scarce because traditional warehousing techniques do not transfer to scientific environments. There are two primary reasons for this difficulty. First, schema integration is more difficult for scientific databases than for business sources, because of the complexity of the concepts and the associated relationships. While this difference has not yet been fully explored, it is an important consideration when determining how to integrate autonomous sources. Second, scientific data sources have highly dynamic data representations (schemata). When a data source participating in a warehouse changes its schema, both the mediator transferring data to the warehouse and the warehouse itself need to be updated to reflect these modifications. The cost of repeatedly performing these updates in a traditional warehouse, as is required in a dynamic environment, is prohibitive. This paper discusses these issues within the context of the DataFoundry project, an ongoing research effort at Lawrence Livermore National Laboratory. DataFoundry utilizes a unique integration strategy to identify corresponding instances while maintaining differences between data from different sources, and a novel architecture and an extensive meta-data infrastructure, which reduce the cost of maintaining a warehouse.

Customized medical image databases: a low-cost approach.

The increasing use of digital images in medicine creates a demand for efficient but simple methods to store, retrieve and display images. The ideal solution for this might be a large-scale hospital-integrated picture archiving and communication systems, but this is not applicable under all conditions. A small-scale, user-defined image database running on a desktop computer may fit the individual needs better, while yielding optimal cost-effectiveness. We will present a way to create customized image databases using a general-purpose desktop database system and a specialized, dedicated image handling component programmed in C++.

Randomised trial of personalised computer based information for cancer patients.

OBJECTIVE: To compare the use and effect of a computer based information system for cancer patients that is personalised using each patient's medical record with a system providing only general information and with information provided in booklets. DESIGN: Randomised trial with three groups. Data collected at start of radiotherapy, one week later (when information provided), three weeks later, and three months later. PARTICIPANTS: 525 patients started radical radiotherapy; 438 completed follow up. INTERVENTIONS: Two groups were offered information via computer (personalised or general information, or both) with open access to computer thereafter; the third group was offered a selection of information booklets. OUTCOMES: Patients' views and preferences, use of computer and information, and psychological status; doctors' perceptions; cost of interventions. RESULTS: More patients offered the personalised information said that they had learnt something new, thought the information was relevant, used the computer again, and showed their computer printouts to others. There were no major differences in doctors' perceptions of patients. More of the general computer group were anxious at three months. With an electronic patient record system, in the long run the personalised information system would cost no more than the general system. Full access to booklets cost twice as much as the general system. CONCLUSIONS: Patients preferred computer systems that provided information from their medical records to systems that just provided general information. This has implications for the design and implementation of electronic patient record systems and reliance on general sources of patient information.

Answering family physicians' clinical questions using electronic medical databases.

OBJECTIVE: We studied the ability of electronic medical databases to provide adequate answers to the clinical questions of family physicians. STUDY DESIGN: Two family physicians attempted to answer 20 questions with each of the databases evaluated. The adequacy of the answers was determined by the 2 physician searchers, and an arbitration panel of 3 family physicians was used if there was disagreement. DATA SOURCE: We identified 38 databases through nominations from national groups of family physicians, medical informaticians, and medical librarians; 14 met predetermined eligibility criteria. OUTCOMES MEASURED: The primary outcome was the proportion of questions adequately answered by each database and by combinations of databases. We also measured mean and median times to obtain adequate answers for individual databases. RESULTS: The agreement between family physician searchers regarding the adequacy of answers was excellent (k=0.94). Five individual databases (STAT!Ref, MDConsult, DynaMed, MAXX, and MDChoice.com) answered at least half of the clinical questions. Some combinations of databases answered 75% or more. The average time to obtain an adequate answer ranged from 2.4 to 6.5 minutes. CONCLUSION: Several current electronic medical databases could answer most of a group of 20 clinical questions derived from family physicians during office practice. However, point-of-care searching is not yet fast enough to address most clinical questions identified during routine clinical practice.

The high-risk myocardial infarction database initiative.

Coronary artery disease and myocardial infarction represent a major cause of morbidity and mortality. Four randomized, controlled, double-blind clinical trials--VALIANT, EPHESUS, OPTIMAAL, and CAPRICORN evaluated pharmacologic intervention in a total of 28,771 high-risk patients following acute MI complicated with signs of heart failure or evidence of left ventricular dysfunction. The demographic profiles of the 4 study cohorts were similar. The High-Risk MI Database Initiative constructed a common database by merging the data captured by these 4 large trials. The merged data set did not contain the randomized study treatment, so no comparisons could be made between the agents investigated. A total of more than 17,600 subjects experienced a cardiovascular end point. Approximately 5100 deaths occurred, and more than 15,700 subjects experienced a hospitalization. The primary objectives of this initiative were to use this large database to define more precisely the prognostic profile of this high-risk population, to perform rigorous, adequately-sized, subset analyses, to provide epidemiologic information and event rate estimation based on baseline demographics. The methodological challenges and limitations of such an analyses are discussed. It is proposed that some thoughtful foresight and planning could enable us to use the large number of clinical events that accrue during randomized clinical trials to address questions of scientific and clinical interest.