Research Infrastructure Research Articles

How to help countries improve resilience during a pandemic: an example of a Rapid Exchange Forum.

The COVID-19 pandemic demanded quick exchanges between experts and institutions supporting governments to provide evidence-based information in response to the crisis. Initially, there was no regular cross-country forum in the field of population health. This paper describes the set-up and benefits of implementing such a forum. A group of public health practitioners from academia, national public health institutes and ministries of health decided in April 2020 to meet bi-monthly to discuss a vast array of population health topics in a structured format called a Rapid Exchange Forum (REF). An ad-hoc mailing group was established to collect responses to questions brought forward in the forum from at least five countries within 24 h. This endeavour, which evolved as network of networks was awarded an EU grant in autumn 2020 and was called PHIRI (Population Health Information Research Infrastructure). Responses from up to 31 countries were compiled and shared immediately via the European Health Information Portal. This exchange was complemented by special REFs that focused on the advantages and disadvantages of vaccination, for example. By July 2023, 54 REFs had taken place with topics going beyond COVID-19. The REF demonstrated its value for quick yet evidence-based cross-country exchange in times of crisis and was highly appreciated by countries and European Commission. It demonstrated its sustainability even after the acute crisis by expanding the topics covered and managing to continue exchange with the aim of capacity building and mutual learning, making it a true EU response and coordination mechanism.

Foresight in public health: a tutorial on application and insights on challenges from the PHIRI foresight exercise.

The application of foresight to the field of public health is limited. There is growing need to anticipate uncertain future trends and to plan for them. Foresight provides tools to experts and policymakers to discuss and plan for possible futures. Hence, the aim of this study is to illustrate how the foresight six-step approach can be applied in public health, and to provide recommendations on dealing with challenges, drawn from the Population Health Information Research Infrastructure (PHIRI) foresight exercise. In this tutorial, we describe the six-step approach as part of foresight methodology and give examples of possible challenges. Step 1 comprises the formulation of study objectives. Step 2 focuses on developing a conceptual model and applying the Demographic Economic Sociocultural Technological Ecological and Political-Institutional (DESTEP) framework to identify and prioritize driving forces for the topic of interest. In Step 3, a time horizon and spatial level are defined. Step 4 discusses scenario logics. Steps 5 and 6 discuss different types of scenarios and associated tools for analyses. Possible challenges encountered whilst applying the foresight methodology at each of the steps, were drawn from experiences during PHIRI foresight exercise. Challenges associated with applying the foresight six-step approach included: formulating concise objectives, developing a conceptual model, understanding driving forces and uncertainty and difficulties in building scenarios. Understanding concepts used in the six-step approach and how they relate to each other remained difficult. Support from foresight experts, conducting more foresight exercises, tutorials and guidelines can enhance understanding and support building capacity.

Enhancing Healthcare Access: Drone-based Delivery of Medicines and Vaccines in hard-to-Reach Terrains of Northeastern India

Background: Ensuring efficient healthcare access in a geographically diverse country like India poses significant challenges, particularly in challenging terrains. Conventional transportation methods often encounter difficulties due to inadequate infrastructure and adverse climatic conditions, resulting in delays in medical supplies. This study aimed to assess the viability of drones for transporting various types of medical supplies across diverse geographical landscapes, also evaluating their impact on transportation time, covered distance, weight carrying capacities and safety of medical supplies. Materials and Methods: The study spanned 4 months across 19 healthcare centres across Manipur and Nagaland. Different types of drones were used for the transportation of vaccines, medications and surgical items across these centres covering terrains such as flatlands, valleys, foothills, islands and hills. Results: Drones were able to successfully transport the medical supplies maintaining the essential temperatures and integrity of the samples. Further, drone-based supplies significantly reduce the delivery time compared to conventional road-based delivery mechanisms. Conclusion: The present study demonstrates the potential application of drones for the delivery of healthcare supplies in remote areas. Despite the logistical challenges, drones offer a time-efficient alternative for medical supply delivery. However, there is a need for further research and logistical infrastructure development in the current field.

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals

BackgroundPalliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research.MethodsA mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis.ResultsParticipants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities.ConclusionsProfessionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

Achieving research impact in medical research through collaboration across organizational boundaries: Insights from a mixed methods study in the Netherlands

BackgroundIn the Netherlands, university medical centres (UMCs) bear primary responsibility for conducting medical research and delivering highly specialized care. The TopCare program was a policy experiment lasting 4 years in which three non-academic hospitals received funding from the Dutch Ministry of Health to also conduct medical research and deliver highly specialized care in specific domains. This study investigates research collaboration outcomes for all Dutch UMCs and non-academic hospitals in general and, more specifically, for the domains in the non-academic hospitals participating in the TopCare program. Additionally, it explores the organizational boundary work employed by these hospitals to foster productive research collaborations.MethodsA mixed method research design was employed combining quantitative bibliometric analysis of publications and citations across all Dutch UMCs and non-academic hospitals and the TopCare domains with geographical distances, document analysis and ethnographic interviews with actors in the TopCare program.ResultsQuantitative analysis shows that, over the period of study, international collaboration increased among all hospitals while national collaboration and single institution research declined slightly. Collaborative efforts correlated with higher impact scores, and international collaboration scored higher than national collaboration. A total of 60% of all non-academic hospitals’ publications were produced in collaboration with UMCs, whereas almost 30% of the UMCs’ publications were the result of such collaboration. Non-academic hospitals showed a higher rate of collaboration with the UMC that was nearest geographically, whereas TopCare hospitals prioritized expertise over geographical proximity within their specialized domains. Boundary work mechanisms adopted by TopCare hospitals included aligning research activities with organizational mindset (identity), bolstering research infrastructure (competence) and finding and mobilizing strategic partnerships with academic partners (power). These efforts aimed to establish credibility and attractiveness as collaboration partners.ConclusionsResearch collaboration between non-academic hospitals and UMCs, particularly where this also involves international collaboration, pays off in terms of publications and impact. The TopCare hospitals used the program’s resources to perform boundary work aimed at becoming an attractive and credible collaboration partner for academia. Local factors such as research history, strategic domain focus, in-house expertise, patient flows, infrastructure and network relationships influenced collaboration dynamics within TopCare hospitals and between them and UMCs.

A novel framework for the assessment of hydro-meteorological risks taking into account nature-based solutions

The growing exposure to hydro-meteorological hazards translates into increasing risks for people, territories, and ecosystems. The frequency of occurrence and magnitude of these hazards are expected to further increase in the next decades urging tangible decisions to reduce anthropogenic climate change and adapt to the risks to be faced. In this context, risk assessment is an essential tool for becoming aware of dangers and taking countermeasures. This paper proposes a novel predictive, yet holistic, framework that allows to take into account multiple risks classified according to six research fields, i.e. healthcare, society, ecosystem, heritage, infrastructure, and agriculture. Each contribution to the overall risk is evaluated in terms of economic losses and carbon-dioxide emissions that in turn affect adaptation ability and contribute to exacerbating climate change. Both economic losses and emissions are estimated as a cost per day to support political decision-making processes. In this regard, the framework integrates the effects of adaptation and mitigation strategies to include societal capacities to cope with hazards and respond to their potential consequences. As a guideline, this study reports a preliminary investigation of a heatwave event over a portion of Bologna Province (Italy) concluding that the current use of air-conditioning systems is not sustainable leading to a huge amount of losses. The novel framework can be adopted in future studies for selecting more cost-effective strategies as expected for Nature-based Solutions (NbS). The framework can indeed stand as a tool for estimating the local impact of NbS in the current or future climate scenarios.

Re-evaluation of Padre Secchi’s visual method for modern oceanography

Secchi-disk is an instrument that enables investigating water transparency, being reflective of sunlight to be used to measure the depth of light penetration in the water column. In biological marine research, the device is used to determine the intensity of primary production of planktonic algae. In the present study, we re-evaluated the practicality of Secchi’s method, developed some 160 years ago, for modern oceanography by using the same locations, methods, objectives, and comparable Secchi disk that were used in his survey in 1865. We show that the Secchi-disk is still a valid scientific method in environmental marine research and therefore defends its place reliably among modern electronical research infrastructure. Observer’s subjectivity didn’t have a significant effect on measuring but environmental conditions can influence ZSD determination in general. It is therefore justified to follow, for example, the general recommendations for the use of the Secchi net issued by HELCOM. Our results also revealed that ZSD was located about twofold deeper in 1865 than presently which cannot be explained only by annual variation. We show that green(ish) sea areas have today extended to larger sea areas than they were 160 years ago, due to an increase in the turbidity of the water resulting from, e.g., general eutrophication.

American Heart Association Cardiogenic Shock Registry: Design and Implementation.

Cardiogenic shock is a morbid complication of heart disease that claims the lives of more than 1 in 3 patients presenting with this syndrome. Supporting a unique collaboration across clinical specialties, federal regulators, payors, and industry, the American Heart Association volunteers and staff have launched a quality improvement registry to better understand the clinical manifestations of shock phenotypes, and to benchmark the management patterns, and outcomes of patients presenting with cardiogenic shock to hospitals across the United States. Participating hospitals will enroll consecutive hospitalized patients with cardiogenic shock, regardless of etiology or severity. Data are collected through individual reviews of medical records of sequential adult patients with cardiogenic shock. The electronic case record form was collaboratively designed with a core minimum data structure and aligned with Shock Academic Research Consortium definitions. This registry will allow participating health systems to evaluate patient-level data including diagnostic approaches, therapeutics, use of advanced monitoring and circulatory support, processes of care, complications, and in-hospital survival. Participating sites can leverage these data for onsite monitoring of outcomes and benchmarking versus other institutions. The registry was concomitantly designed to provide a high-quality longitudinal research infrastructure for pragmatic randomized trials as well as translational, clinical, and implementation research. An aggregate deidentified data set will be made available to the research community on the American Heart Association's Precision Medicine Platform. On March 31, 2022, the American Heart Association Cardiogenic Shock Registry received its first clinical records. At the time of this submission, 100 centers are participating. The American Heart Association Cardiogenic Shock Registry will serve as a resource using consistent data structure and definitions for the medical and research community to accelerate scientific advancement through shared learning and research resulting in improved quality of care and outcomes of shock patients.

LMIC-10. GLOBAL MAPPING OF CLINICAL TRIALS FOR CHILDREN WITH CNS TUMORS

Abstract BACKGROUND While there has been an international call to increase access to pediatric oncology clinical trials, the current landscape of global clinical trials for pediatric central nervous system (CNS) tumors has not been described. We sought to analyze the availability of clinical trials available for children with CNS tumors worldwide. METHODS Clinical trials were included if they were interventional studies registered in International Clinical Trials Registry Platform (ICTRP) that included pediatric patients (≤17 years old) with a CNS tumor. PubMed and Google Scholar were used to identify peer-reviewed manuscripts describing the results of identified trials. RESULTS From 114,414 oncology trials, 322 studies met inclusion criteria. Geographically, 307 (95%) studies were sponsored by and conducted in high-income countries (HICs), while 15 studies (4.7%) were sponsored by and conducted in middle-income countries (MICs). No studies were registered in or accrued from low-income countries. Studies were mostly sponsored in the United States (244, 76%), United Kingdom (20, 6.2%), or France (13, 4.0%). Trials were mostly sponsored by individual institutions (168, 52%), followed by governmental organizations (100, 31%), collaborative groups (36, 11%) and pharmaceutical companies (18, 5.5%). Study characteristics differed with income status, with HICs registering mostly clinical trials for cancer-directed treatment (261, 85%) and MICs registering later phase supportive care-based or diagnostic trials (9, 60%). Of the studies included, 132 (43%) were published. There were similar rates of publishing results in HIC and MICs. Discussion: Low- and middle-income countries are under-represented in the global clinical research landscape of pediatric CNS tumors. Furthermore, these data describe the urgent needs to invest in clinical research infrastructure in LMICs and to foster collaborations that include LMICs as a critical step in achieving equity in global pediatric cancer care.

Analyzing the Effect of Magnetic Field Strength on the Behavior of Ferromagnetic Materials in United States

Purpose: The aim of the study was to analyzing the effect of magnetic field strength on the behavior of ferromagnetic materials in United States. Methodology: This study adopted a desk methodology. A desk study research design is commonly known as secondary data collection. This is basically collecting data from existing resources preferably because of its low cost advantage as compared to a field research. Our current study looked into already published studies and reports as the data was easily accessed through online journals and libraries. Findings: In the United States show that magnetic field strength affects the behavior of ferromagnetic materials by inducing structural changes, influencing lattice distortions and phase transformations. These findings deepen our understanding of magneto structural coupling, aiding material design. Additionally, research on magnetostriction behavior highlights the interplay between field strength, microstructure, and response. Unique Contribution to Theory, Practice and Policy: Domain theory, stoner-wohlfarth model & micro magnetic theory may be used to anchor future studies on magnetic field strength on the behavior of ferromagnetic materials. Conduct systematic experimental studies to validate theoretical predictions and elucidate the practical implications of magnetic field effects on material behavior. Governments and funding agencies should allocate resources to support research infrastructure for studying magnetic materials and phenomena.

Computing platform for fast analysis of experimental big data

A multi-purpose computing platform for processing (big) data collected from experiments and large research infrastructures is developed. The platform is validated in a case study on monitoring data aquired by the SCADA system of the High Power Laser System at ELI-NP.

Toward the European Health Data Space: The IMPaCT-Data secure infrastructure for EHR-based precision medicine research

Background:Art. 50 of the proposal for a Regulation on the European Health Data Space (EHDS) states that “health data access bodies shall provide access to electronic health data only through a secure processing environment, with technical and organizational measures and security and interoperability requirements”. Objective:To identify specific security measures that nodes participating in health data spaces shall implement based on the results of the IMPaCT-Data project, whose goal is to facilitate the exchange of electronic health records (EHR) between public entities based in Spain and the secondary use of this information for precision medicine research in compliance with the General Data Protection Regulation (GDPR). Data and methods:This article presents an analysis of 24 out of a list of 72 security measures identified in the Spanish National Security Scheme (ENS) and adopted by members of the federated data infrastructure developed during the IMPaCT-Data project. Results:The IMPaCT-Data case helps clarify roles and responsibilities of entities willing to participate in the EHDS by reconciling technical system notions with the legal terminology. Most relevant security measures for Data Space Gatekeepers, Enablers and Prosumers are identified and explained. Conclusion:The EHDS can only be viable as long as the fiduciary duty of care of public health authorities is preserved; this implies that the secondary use of personal data shall contribute to the public interest and/or to protect the vital interests of the data subjects. This condition can only be met if all nodes participating in a health data space adopt the appropriate organizational and technical security measures necessary to fulfill their role.

Drivers of Higher Education Rankings: A Case Study of Uzbekistan

Uzbekistan is strategically focused on enhancing its international academic stature by exploring the determinants influencing higher education institution rankings. This study delves into the myriad factors shaping these rankings through qualitative interviews conducted with university authorities, local expert consultants, and the QS Consulting Team. Key determinants identified include the academic reputation of the university, research output, internationalization efforts, faculty development initiatives, and industrial collaborations. The findings underscore the significance universities place on robust research infrastructure, fostering international relations, and ensuring student success. While there is a shared vision among institutions, disparities exist in resource allocation and engagement in international collaborations. This comprehensive review of higher education in Uzbekistan not only contributes to rankings research but also holds potential to inform policymakers and educational administrators in enhancing the national education landscape. Recommendations stemming from this study include the development of a comprehensive government framework for internationalization, increased financial investment in education, fostering industry-academic partnerships, and promoting acceptance and diversity within universities. This paper offers specific policy and practice recommendations tailored to assist Uzbek institutions in enhancing, sustaining, and attaining global recognition. Its detailed analysis of how rankings influence institutional policies and strategic decisions serves as a valuable resource for stakeholders within and beyond Uzbekistan, facilitating a deeper understanding of how higher education rankings shape global academic benchmarks.

The INFRACHIP European research infrastructure for emerging and responsible electronics

The INFRACHIP European research infrastructure for emerging and responsible electronics

Establishment of a novel small bowel adenocarcinoma cell line using patient‑derived xenografts, which produces CEA and CA19‑9.

Small bowel adenocarcinoma (SBA) is a rare tumor with a poor prognosis. Due to its rarity, the research infrastructure for SBA, including cell lines, is inadequate. The present study established a novel SBA cell line, SiCry-15X, using patient-derived xenografts of SBA. The following criteria were defined for establishment: Long-term culturability, tumorigenicity and similarity with the original tumor. The biological characteristics of the cell line, its sensitivity to anticancer drugs and its ability to produce tumor markers carcinoembryonic antigen (CEA) and carbohydrate antigen 19-9 (CA19-9) were evaluated. SiCry-15X cells adhered and grew as a monolayer, with a population doubling time of 37 h. Polymerase chain reaction results confirmed the human origin of the cell line, and short tandem repeat analysis revealed that the cells were genetically identical to the original tumor. The 50% inhibitory concentrations of 5-fluorouracil, paclitaxel, irinotecan, oxaliplatin and cisplatin for SiCry-15X were 104.05, 0.24, 63.3, 146.55 and 49.29 µM, respectively. CEA and CA19-9 concentrations in the culture media were markedly elevated. In addition, CEA and CA19-9 levels in the serum of cell-derived xenograft model mice were elevated. Moreover, CEA and CA19-9 were produced by SiCry-15X cells and distributed throughout the blood. Furthermore, increases in serum CEA and CA19-9 of cell-derived xenograft model mice were consistent with the clinical course of the disease. The newly established SBA cell line, SiCry-15X, could be an effective tool for conducting further studies on SBA.

Barriers to and facilitators of paediatric medical device innovation: a scoping review protocol

IntroductionThe development of paediatric medical devices continues to lag adult medical devices and contributes to issues of inequity, safety, quality and patient outcomes. New legislation and funding mechanisms have been...

Low-code and ai-augmented Code for an Archaeological Database: Arkas 2.0

Abstract This data paper presents Arkas 2.0, a national research database and research infrastructure containing data on all archaeological sites and monuments in Slovenia. The new database is a hybrid cloud microservice built on low-code platforms (Caspio and ArcGIS Experience builder) and augmented by generative ai (ChatGPT-3.5). The data paper describes the Arkas 2.0 dataset and how it fits into the research context by discussing the challenges archaeologists face in setting up and curating datasets and the associated digital infrastructure. In response to these challenges, the data paper highlights the benefits of low-code platforms and ai-augmented code for archaeological research. It also describes the Arkas 2.0 development workflow, its new data structure, and its archiving process. The data paper concludes by suggesting that the use of low-code platforms combined with generative ai can democratise access to cutting-edge digital research infrastructure, bringing positive disruption to archaeology and the humanities.

Site research infrastructure and institutional performance: A report from the Voting Body of the Children’s Oncology Group (COG).

e23113 Background: National Cancer Institute (NCI) sponsored cooperative group clinical research has led to significant improvements in outcomes for childhood cancer in the United States. COG is the world’s largest cooperative group, comprised of 218 institutions in good standing. There are no benchmark data of the necessary research infrastructure for successful participation in COG research. Objectives: 1) To ascertain the research personnel (RP) devoted to COG research at each member institution. 2) To compare available resources with institutional performance. Design. Methods: A REDCap® survey was designed and sent to all 218 COG institutional principal investigators (PI) with a 4-week window to complete the survey with scheduled reminders. Questions included number of and types of RP [clinical research associates (CRA), nurses, and regulatory]. To measure performance, we used the 2022 Institutional Report Card from COG that reports open trials and enrollments at each site. Sites were categorized into 4 groups based on self-reported new oncology patients diagnosed per year. We compared the number of RP to the a) number of studies open, b) enrollment on therapeutic and non-therapeutic studies. We ranked performance into quartiles by institution size. Results: 134 PIs (61%) answered some or all questions on the survey. All institutional sizes were well-represented. Total number of RP varied dramatically, even among institutions of similar size, with median number 3 RP, range 0.9-28.5. Comparing the number of open studies to regulatory personnel at site, those institutions in the top quartile for each group (except very smallest) had a minimum of 91 studies open and had at least 1 FTE for regulatory, while those in the lowest quartiles (10-67 studies open) had < 1 FTE. Total number of RP were similarly correlated with the number of enrollments, with mean of 12.5 and median 15 enrollments for each RP. Conclusions: Sites successful at opening COG studies and enrolling patients had more research personnel. We show to perform in the top quartiles, there should be at least 1 FTE dedicated to regulatory issues and another 1 FTE for every 12-15 enrolled subjects. [Table: see text]

Exploring the Roles, Functions, and Work Experiences of Nurse Scientists in the Veterans Health Administration.

The aim of this project was to describe nurse scientists' roles, functions, and work experiences in the Veterans Health Administration (VHA). Nurse scientists play a critical role in shaping the culture of clinical inquiry and closing the gap between knowledge and practice. A cross-sectional survey was used to collect information on sociodemographics, workload, research, clinical practice, education, and time/effort. Data were examined using descriptive statistics and χ2 analyses. One hundred forty-four nurse scientists completed the survey. These nurse scientists serve dynamic and critical roles in conducting research, implementing evidence-based practice, and reforming policy. Research effort was limited due to workload and infrastructure constraints. Better research infrastructure was associated with higher research productivity and funding. This survey highlights the needs and challenges nurse scientists experience in conducting research and advancing VHA's mission. Given the national shortage of PhD-prepared nurses, long-term strategies are needed to attract, hire, and retain nurse scientists in healthcare systems.

Global perspective of barriers in research among oncologists from low-middle income countries.

e13781 Background: Cancer research in low-middle income countries (LMICs) face unique challenges, hindering advancements in patient care. Understanding the practices, barriers and strategic needs encountered by oncologists in LMICs is essential for enhancing research capacities and patient outcomes. This study aimed to assess the barriers and facilitators of research among oncologists in LMICs. Methods: This online cross-sectional survey engaged a diverse group of practicing oncologists from LMICs between December 8, 2023 and February 6, 2024. Respondents include both oncology trainees and consultants primarily from Asia (63%), Africa (18%) and Europe (10%). Using a validated questionnaire (test-retest reliability: 0.98), data analysis was performed using frequency and percentages to detail the survey responses, with 95% confidence intervals calculated to ensure the findings reliability. Results: A total of 276 participants from 29 countries, with a mean age of 38 years, responded to the survey. Fifty three percent (n=146) were male and 46% (n = 126) were female, four participants chose not to disclose. Majority of the respondents were trained in medical oncology and related specialties, 71% (n = 196). Forty one percent (n = 113) of them had less than 5 years’ experience as a cancer physician, while a significant proportion were mid-career oncologists with 5 to 15 years of experience. Regarding individual level barriers; 3% (n = 7) had 60 - 100% protected research time, 3% (n = 8) had local and international mentors, 36% (n = 100) had no biostatistical training, 50% (n = 138) had no clinical trial design training, 11% (n = 29) had utilized qualitative design, 60% (n = 165) had not participated in a population-based study, and 83% (n = 228) had not participated in translational research. In relation to system-level barriers; 30% (n = 84) had inadequate research infrastructure and 43% (n = 120) had no clinical trials unit. Respondents rated the degree of implementation of new research findings into local clinical practice as 3 on a five-point Likert scale. Conclusions: This study highlights the critical gaps in research capacity, resource availability, and infrastructure among oncologists from LMICs. Addressing these barriers through targeted interventions is imperative for advancing cancer research and improving patient outcomes in LMIC settings.