Using technology to promote the development of health science libraries in China.

From the point of view of the development of libraries, technology has made possible the emergence and development of library automation; digital libraries; mobile libraries; and smart libraries. This article briefly describes the impact of technological developments and application in Health Science Libraries in China in relation to collections development, service provision and the role of library associations.

Heterogeneous information network and its application to human health and disease.

The molecular components with the functional interdependencies in human cell form complicated biological network. Diseases are mostly caused by the perturbations of the composite of the interaction multi-biomolecules, rather than an abnormality of a single biomolecule. Furthermore, new biological functions and processes could be revealed by discovering novel biological entity relationships. Hence, more and more biologists focus on studying the complex biological system instead of the individual biological components. The emergence of heterogeneous information network (HIN) offers a promising way to systematically explore complicated and heterogeneous relationships between various molecules for apparently distinct phenotypes. In this review, we first present the basic definition of HIN and the biological system considered as a complex HIN. Then, we discuss the topological properties of HIN and how these can be applied to detect network motif and functional module. Afterwards, methodologies of discovering relationships between disease and biomolecule are presented. Useful insights on how HIN aids in drug development and explores human interactome are provided. Finally, we analyze the challenges and opportunities for uncovering combinatorial patterns among pharmacogenomics and cell-type detection based on single-cell genomic data.

The Undiagnosed Diseases Network International: Five years and more!

Undiagnosed rare diseases (URDs) account for a significant portion of the overall rare disease burden, depending upon the country. Hence, URDs represent an unmet medical need. A specific challenge posed by the ensemble of the URD patient cohort is the heterogeneity of its composition; the group, indeed, includes very rare, still unidentified conditions as well as clinical variants of recognized rare diseases. Exact disease recognition requires new approaches that cut across national and institutional boundaries, may need the implementation of methods new to diagnostics, and embrace clinical care and research. To address these issues, the Undiagnosed Diseases Network International (UDNI) was established in 2014, with the major aims of providing diagnoses to patients, implementing additional diagnostic tools, and fostering research on novel diseases, their mechanisms, and their pathways. The UDNI involves centres with internationally recognized expertise, and its scientific resources and know-how aim to fill the knowledge gaps that impede diagnosis, in particularly for ultra-rare diseases. Consequently, the UDNI fosters the translation of research into medical practice, aided by active patient involvement. The goals of the UDNI are to work collaboratively and at an international scale to: 1) provide diagnoses for individuals who have conditions that have eluded diagnosis by clinical experts; 2) gain insights into the etiology and pathogenesis of novel diseases; 3) contribute to standards of diagnosing unsolved patients; and 4) share the results of UDNI research in a timely manner and as broadly as possible.

Information specialist collaboration in Europe: collaborative methods, processes, and infrastructure through EUnetHTA.

The history of European health technology assessment (HTA) goes back more than 30 years. Almost as old as HTA agencies themselves is the desire to achieve European collaboration. This gained further impetus with the establishment of the European Network of Health Technology Assessment (EUnetHTA) in 2006. In this context, the field of information management faced specific challenges. Although these services are an integral part of HTA and information specialists play a key role here, this field is often not adequately represented in the HTA agencies within EUnetHTA. Furthermore, the organization of HTA production, including the types of HTAs produced, as well as funding, varies considerably. In order to meet these different conditions, information specialists have created various products and defined processes. With the EUnetHTA guideline, a common methodological understanding for the production of rapid Relative Effectiveness Assessments now exists. Furthermore, the Standard Operating Procedures map the complex information retrieval processes within EUnetHTA in a hands-on manner. The newly established Information Specialist Network (ISN) will in future ensure that information specialists are involved in all EUnetHTA assessments and that the methods are applied consistently in all assessments. In addition, the steering committee of the ISN manages enquiries and can be contacted to discuss methodological issues. Major barriers such as heterogeneity in the daily work of the EUnetHTA members can only be overcome through more collaboration and training.

An agent-based model about the effects of fake news on a norovirus outbreak.

BACKGROUND: Concern about health misinformation is longstanding, especially on the Internet. METHODS: Using agent-based models, we considered the effects of such misinformation on a norovirus outbreak, and some methods for countering the possible impacts of "good" and "bad" health advice. The work explicitly models spread of physical disease and information (both online and offline) as two separate but interacting processes. The models have multiple stochastic elements; repeat model runs were made to identify parameter values that most consistently produced the desired target baseline scenario. Next, parameters were found that most consistently led to a scenario when outbreak severity was clearly made worse by circulating poor quality disease prevention advice. Strategies to counter "fake" health news were tested. RESULTS: Reducing bad advice to 30% of total information or making at least 30% of people fully resistant to believing in and sharing bad health advice were effective thresholds to counteract the negative impacts of bad advice during a norovirus outbreak. CONCLUSION: How feasible it is to achieve these targets within communication networks (online and offline) should be explored.

[Service rendered's assessment of a pharmaceutical information center on patients care]. / Évaluation du service rendu d'un centre d'information pharmaceutique sur la prise en charge des patients.

The Question-Answer (Q/R) service of Lyon's teaching hospital, offers reliable and updated information for healthcare professionals (HP). The impact of Q/R activity on patient outcome was measured by using a survey to assess user's satisfaction and impact on HP knowledge and/or patients cares. The compatibility of this tool with daily use had been assessed too. MATERIALS AND METHODS: The survey was sent prospectively, for 9 months in 2018, to all HP whose enquiry was linked to a particular patient's care. The survey was posted 24-48h after the answer had been provided. RESULTS: 41 survey over 55 sent were returned (74.5%). The level of satisfaction measured is mostly good or excellent on all evaluated items. The HP surveyed consider that the responses provided have a potential positive impact on their professional knowledge and practices (97.6%), on the patient's care (n=36/37) and patient outcome (n=22/23). CONCLUSION: High level of satisfaction with the Q/R service and positive impact of this specialized Q/R service on improvement of HP knowledge and patient's care. This tool can be used in daily practice.

Science communication in the field of fundamental biomedical research (editorial).

The aim of this special issue on science communication is to inspire and help scientists who are taking part or want to take part in science communication and engage with the wider public, clinicians, other scientists or policy makers. For this, some articles provide concise and accessible advice to individual scientists, science networks, or learned societies on how to communicate effectively; others share rationales, objectives and aims, experiences, implementation strategies and resources derived from existing long-term science communication initiatives. Although this issue is primarily addressing scientists working in the field of biomedical research, much of it similarly applies to scientists from other disciplines. Furthermore, we hope that this issue will also be used as a helpful resource by academic science communicators and social scientists, as a collection that highlights some of the major communication challenges that the biomedical sciences face, and which provides interesting case studies of initiatives that use a breadth of strategies to address these challenges. In this editorial, we first discuss why we should communicate our science and contemplate some of the different approaches, aspirations and definitions of science communication. We then address the specific challenges that researchers in the biomedical sciences are faced with when engaging with wider audiences. Finally, we explain the rationales and contents of the different articles in this issue and the various science communication initiatives and strategies discussed in each of them, whilst also providing some information on the wide range of further science communication activities in the biomedical sciences that could not all be covered here.

The Italian Network for Tumor Bio-Immunotherapy (NIBIT) Foundation: ongoing and prospective activities in immuno-oncology.

The ongoing revolution in cancer immunotherapy stems from the knowledge that distinct immune-checkpoints regulate the physiological crosstalk between and among immune cells by delivering inhibitory or activating signals. These notions, and the availability of mAb directed to diverse immune-checkpoint molecules, have led to a significant clinical improvement in cancer treatment. In this scenario, further achievements are undoubtedly to be expected from the contribution of novel, proof-of-principle clinical trials designed to explore the therapeutic efficacy of new immunotherapy-based combinations and treatment sequences. Along these lines, the clinical translation of pre-clinical evidence generated by non-profit research entities is likely to provide a significant contribution to gaining new insights that will further boost the field of cancer immunotherapy. To pursue this goal, and to provide comprehensive educational programs in immune-oncology (I-O), several national and global networks have been revitalized or newly established in recent years. This rapidly evolving scenario led the Board of Directors of the Italian Network of Tumor Bio-Immunotherapy (NIBIT) to establish the NIBIT Foundation. This Focused Research Review summarizes the main ongoing and prospective I-O activities of the NIBIT Foundation.

Together towards a common goal: REVIVE, a community of antimicrobial researchers brought together by the Global Antibiotic Research & Development Partnership (GARDP).

The Global Antibiotic Research & Development Partnership (GARDP) has launched a project, REVIVE, to connect and support the antimicrobial research and development (R&D) community. REVIVE's educational activities include a webinar series and sessions and presentations at key conferences. REVIVE also aims to connect antimicrobial researchers with each other and with current and retired experts in the field, and to develop a comprehensive repository of relevant resources for the R&D community.

Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States.

The mitochondrial medicine society (MMS) has previously highlighted the clinical landscape and physician practice patterns of mitochondrial medicine in the US and attempted to develop consensus criteria for diagnosis and management to improve patient coordinated care. Most recently, and in collaboration with US-based patient advocacy groups, we developed a clinical care network to formally unify US-based clinicians who provide medical care to individuals with mitochondrial disease; to define, design and implement best practices in mitochondrial medicine building on the current consensus guidelines and to improve patients' clinical outcomes. Here we review the steps taken in collaboration with several stakeholders to develop goals and expectations for a mitochondrial care network (MCN), criteria for MCN site selection and formal launch of the network.

Needs assessment for improving library support for dentistry researchers.

OBJECTIVE: To better support dentistry researchers in the ever-changing landscape of scholarly research, academic librarians need to redefine their roles and discover new ways to be involved at each stage of the research cycle. A needs assessment survey was conducted to evaluate faculty members' research support needs and allow a more targeted approach to the development of research services in an academic health sciences library. METHODS: The anonymous, web-based survey was distributed via email to full-time researchers at the Faculty of Dentistry, University of Toronto. The survey included twenty questions inquiring about researchers' needs and behaviors across three stages of the research cycle: funding and grant applications, publication and dissemination, and research impact assessment. Data were also collected on researchers' use of grey literature to identify whether current library efforts to support researchers should be improved in this area. RESULTS: Among library services, researchers considered support for funding and grant applications most valuable and grey literature support least valuable. Researcher engagement with open access publishing models was low, and few participants had self-archived their publications in the university's institutional repository. Participants reported low interest in altmetrics, and few used online tools to promote or share their research results. CONCLUSIONS: Findings indicate that increased efforts should be made to promote and develop services for funding and grant applications. New services are needed to assist researchers in maximizing their research impact and to increase researcher awareness of the benefits of open access publishing models, self-archiving, and altmetrics.

Effects of the Informed Health Choices primary school intervention on the ability of children in Uganda to assess the reliability of claims about treatment effects: a cluster-randomised controlled trial.

BACKGROUND: Claims about what improves or harms our health are ubiquitous. People need to be able to assess the reliability of these claims. We aimed to evaluate an intervention designed to teach primary school children to assess claims about the effects of treatments (ie, any action intended to maintain or improve health). METHODS: In this cluster-randomised controlled trial, we included primary schools in the central region of Uganda that taught year-5 children (aged 10-12 years). We excluded international schools, special needs schools for children with auditory and visual impairments, schools that had participated in user-testing and piloting of the resources, infant and nursery schools, adult education schools, and schools that were difficult for us to access in terms of travel time. We randomly allocated a representative sample of eligible schools to either an intervention or control group. Intervention schools received the Informed Health Choices primary school resources (textbooks, exercise books, and a teachers' guide). Teachers attended a 2 day introductory workshop and gave nine 80 min lessons during one school term. The lessons addressed 12 concepts essential to assessing claims about treatment effects and making informed health choices. We did not intervene in the control schools. The primary outcome, measured at the end of the school term, was the mean score on a test with two multiple-choice questions for each of the 12 concepts and the proportion of children with passing scores on the same test. This trial is registered with the Pan African Clinical Trial Registry, number PACTR201606001679337. FINDINGS: Between April 11, 2016, and June 8, 2016, 2960 schools were assessed for eligibility; 2029 were eligible, and a random sample of 170 were invited to recruitment meetings. After recruitment meetings, 120 eligible schools consented and were randomly assigned to either the intervention group (n=60, 76 teachers and 6383 children) or control group (n=60, 67 teachers and 4430 children). The mean score in the multiple-choice test for the intervention schools was 62·4% (SD 18·8) compared with 43·1% (15·2) for the control schools (adjusted mean difference 20·0%, 95% CI 17·3-22·7; p<0·00001). In the intervention schools, 3967 (69%) of 5753 children achieved a predetermined passing score (≥13 of 24 correct answers) compared with 1186 (27%) of 4430 children in the control schools (adjusted difference 50%, 95% CI 44-55). The intervention was effective for children with different levels of reading skills, but was more effective for children with better reading skills. INTERPRETATION: The use of the Informed Health Choices primary school learning resources, after an introductory workshop for the teachers, led to a large improvement in the ability of children to assess claims about the effects of treatments. The results show that it is possible to teach primary school children to think critically in schools with large student to teacher ratios and few resources. Future studies should address how to scale up use of the resources, long-term effects, including effects on actual health choices, transferability to other countries, and how to build on this programme with additional primary and secondary school learning resources. FUNDING: Research Council of Norway.

Effects of the Informed Health Choices podcast on the ability of parents of primary school children in Uganda to assess claims about treatment effects: a randomised controlled trial.

BACKGROUND: As part of the Informed Health Choices project, we developed a podcast called The Health Choices Programme to help improve the ability of people to assess claims about the benefits and harms of treatments. We aimed to evaluate the effects of the podcast on the ability of parents of primary school children in Uganda to assess claims about the effects of treatments. METHODS: We did this randomised controlled trial in central Uganda. We recruited parents of children aged 10-12 years who were in their fifth year of school at 35 schools that were participating in a linked trial of the Informed Health Choices primary school resources. The parents were randomly allocated (1:1), via a web-based random number generator with block sizes of four and six, to listen to either the Informed Health Choices podcast (intervention group) or typical public service announcements about health issues (control group). Randomisation was stratified by parents' highest level of formal education attained (primary school, secondary school, or tertiary education) and the allocation of their children's school in the trial of the primary school resources (intervention vs control). The primary outcome, measured after listening to the entire podcast, was the mean score and the proportion of parents with passing scores on a test with two multiple choice questions for each of nine key concepts essential to assessing claims about treatments (18 questions in total). We did intention-to-treat analyses. This trial is registered with the Pan African Clinical Trial Registry, number PACTR201606001676150. FINDINGS: We recruited parents between July 21, 2016, and Oct 7, 2016. We randomly assigned 675 parents to the podcast group (n=334) or the public service announcement group (n=341); 561 (83%) participants completed follow-up. The mean score for parents in the podcast group was 67·8% (SD 19·6) compared with 52·4% (17·6) in the control group (adjusted mean difference 15·5%, 95% CI 12·5-18·6; p<0·0001). In the podcast group, 203 (71%) of 288 parents had a predetermined passing score (≥11 of 18 correct answers) compared with 103 (38%) of 273 parents in the control group (adjusted difference 34%, 95% CI 26-41; p<0·0001). No adverse events were reported. INTERPRETATION: Listening to the Informed Health Choices podcast led to a large improvement in the ability of parents to assess claims about the effects of treatments. Future studies should assess the long-term effects of use of the podcast, the effects on actual health choices and outcomes, and how transferable our findings are to other countries. FUNDING: Research Council of Norway.

Let the IRIS Bloom:Regrowing the integrated risk information system (IRIS) of the U.S. Environmental Protection Agency.

The Integrated Risk Information System (IRIS) of the U.S. Environmental Protection Agency (EPA) has an important role in protecting public health. Originally it provided a single database listing official risk values equally valid for all Agency offices, and was an important tool for risk assessment communication across EPA. Started in 1986, IRIS achieved full standing in 1990 when it listed 500 risk values, the effort of two senior EPA groups over 5 years of monthly face-to-face meetings, to assess combined risk data from multiple Agency offices. Those groups were disbanded in 1995, and the lack of continuing face-to-face meetings meant that IRIS became no longer EPA's comprehensive database of risk values or their latest evaluations. As a remedy, a work group of the Agency's senior scientists should be re-established to evaluate new risks and to update older ones. Risk values to be reviewed would come from the same EPA offices now developing such information on their own. Still, this senior group would have the final authority on posting a risk value in IRIS, independently of individual EPA offices. This approach could also lay the groundwork for an all-government IRIS database, especially needed as more government Agencies, industries and non-governmental organizations are addressing evolving risk characterizations.

Implementation of a Research Information Management System in a Pediatric Hospital.

Faculty publications have been collected in universities, health, and medical institutions for many years, and Cincinnati Children's is no exception. Since 1949, a yearly list of faculty publications was manually compiled using multiple data sources and disseminated by the Edward L. Pratt Research Library. Products to centralize faculty publication collection and analysis with bibliometric tools are growing in popularity. This article will review the collaborative decision to choose a Research Information Management System and the implementation process including successes, challenges, and future opportunities.

[The REDSIAM network]. / Le réseau REDSIAM (Réseau données Sniiram) ­ Spécial REDSIAM.

The French national health database (SNIIRAM) proved to be very useful for epidemiology, health economics, evaluation, surveillance or public health. However, it is a complex database requiring important resources and expertise for being used. The REDSIAM network has been set up for promoting the collaboration of teams working on the Sniiram. The main aim of REDSIAM is to develop and validate methods for analyzing the Sniiram database for research, surveillance, evaluation and public health purposes by sharing the knowledge and experience of specialized teams in the fields of diseases identification from the Sniiram data. The work conducted within the network is devoted to the development and the validation of algorithms using Sniiram data for identifying specific diseases. The REDSIAM governance includes the Steering Committee composed of the main organizations in charge of producing and using the Sniiram data, the Bureau and the Technical Committee. The network is organized in thematic working groups focused on specific pathological domains, and a charter defines the rules for participation in the network, the functioning of the thematic working groups, the rules for publishing and making available algorithms. The articles in this special issue of the journal present the first results of some of the thematic working groups.

Views of patient, healthcare professionals and administrative staff on flow of information and collaboration in a regional health information exchange: a qualitative study.

BACKGROUND: Nowadays, patients can be more involved in developing healthcare services with their healthcare professionals. Patient-centred information is a key part of improving regional health information exchange (HIE), giving patients an active role in care management. AIM: The aim was to get a deeper understanding of the flow of information and collaboration in one hospital district area from the viewpoint of patients, healthcare professionals and administrative staff. METHODS: The data were collected by themed interviews and analysed using both deductive and inductive content analyses. The interview themes were the flow of information and collaboration after 5 years of HIE usage in one hospital district area in Finland. FINDINGS: Health information exchange usage had changed the regional flow of information after the 5-year period. The patients were satisfied that their primary care physician was able to access their special care information. The experiences of healthcare professionals and administrative staff also showed that information availability and information exchange had improved regionally. HIE usage was also found to have improved regional collaboration between different organisations in patient health care. CONCLUSIONS: It was recognised that patients had taken on more responsibility for transferring their follow-up treatment information. Healthcare information exchange between professionals not only improves patient care or patient involvement in their own care, but it also requires that patient self-care or self-care management is integrated into HIE systems to share information not only among professionals, but also between patients and professionals. This information will be used in the development of healthcare systems to meet more the developing of the continuity of care the patient's point of view.

Highlights of the Biology and Disease-driven Human Proteome Project, 2015-2016.

The Biology and Disease-driven Human Proteome Project (B/D-HPP) is aimed at supporting and enhancing the broad use of state-of-the-art proteomic methods to characterize and quantify proteins for in-depth understanding of the molecular mechanisms of biological processes and human disease. Based on a foundation of the pre-existing HUPO initiatives begun in 2002, the B/D-HPP is designed to provide standardized methods and resources for mass spectrometry and specific protein affinity reagents and facilitate accessibility of these resources to the broader life sciences research and clinical communities. Currently there are 22 B/D-HPP initiatives and 3 closely related HPP resource pillars. The B/D-HPP groups are working to define sets of protein targets that are highly relevant to each particular field to deliver relevant assays for the measurement of these selected targets and to disseminate and make publicly accessible the information and tools generated. Major developments are the 2016 publications of the Human SRM Atlas and of "popular protein sets" for six organ systems. Here we present the current activities and plans of the BD-HPP initiatives as highlighted in numerous B/D-HPP workshops at the 14th annual HUPO 2015 World Congress of Proteomics in Vancouver, Canada.

Clinical Neuropathology Views - 2/2016: Digital networking in European neuropathology: An initiative to facilitate truly interactive consultations.

Digital technology is progressively changing our vision of the practice of neuropathology. There are a number of facts that support the introduction of digital neuropathology. With the development of wholeslide imaging (WSI) systems the difficulties involved in implementing a neuropathology network have been solved. A relevant difficulty has been image standardization, but an open digital image communication protocol defined by the Digital Imaging and Communications in Medicine (DICOM) standard is already a reality. The neuropathology network should be established in Europe because it is the expected geographic context for relationships among European neuropathologists. There are several limitations in the implementation of a digital neuropathology consultancy network such as financial support, operational costs, legal issues, and technical assistance of clients. All of these items have been considered and should be solved before implementing the proposal. Finally, the authors conclude that a European digital neuropathology network should be created for patients' benefit.