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Cross-border access to clinical trials:participation of pediatric patients and language inclusion
Get PDFBACKGROUND: Cross-border access to clinical trials in Europe lacks specific regulation. Language diversity in Europe, with 24 official languages, is a key factor that must be considered when including international pediatric patients in multi-country studies. Providing translation enables patients to participate in clinical trials across borders. Specific consideration requires pediatric rare disease clinical trials for conditions with no approved treatment, where only a few countries participate, making cross-border access even more critical. METHODS: We analyzed retrospective data (2011-2024) of the studies incorporating international patients at SJD Barcelona Children's Hospital. The main objective of this research was to assess the feasibility of cross-border access to pediatric clinical trials and identify lessons learnt that could help prevent the future exclusion of patients due to their limited proficiency in the official language of the country where the trial site is located. RESULTS: Twenty-one clinical studies have been analyzed. One hundred eighty-one patients from both European and non-European countries (N = 44) were screened, 37.02% of the patients were from Europe, versus 62.98% from non-European countries. In 52.38% of the studies, the translation services were provided by the site; in 14.28% by the sponsor. In 33.33% of the studies, no translation was necessary because the site staff could communicate with the families in Spanish or English. 57.14% of the studies included one or more PROMs or QoL scales, requiring, in some cases, the use of validated translations in the mother tongue of the patient. CONCLUSION: Participation in pediatric cross-border clinical trials is feasible. The decision to include international patients should prioritize potential medical benefits rather than using the patient's mother tongue or home country as eligibility criteria. Language barriers can be addressed by providing the necessary resources to ensure the scientific reliability of data collected, as well as to enhance the patient experience during participation in a trial abroad. IMPACT: The SJD Barcelona Children's Hospital Clinical Trials Unit operates under a one-stop-shop model, managing clinical studies with a special focus on rare diseases, centralizing all the needs of international patients (translations, accommodation, visas, etc.). The inclusion of international patients in pediatric clinical studies is feasible. Pediatric rare diseases require a small sample of patients, highly specialized sites, and flexibility to accommodate the necessary translations for patients. The final decision regarding the inclusion of international patients lies with the sponsor. Flexibility in including international patients directly impacts the study plan and execution, preventing time deviations
Toward the crystallographic and microstructural mechanisms of plant leaf waxes as diffusion barriers
No full textWaxes within the leaf cuticle, the outermost layer of the plant leaf, play a defining role as a transpiration barrier and also serve as an important target for agrochemical interventions for crop protection. A prevailing model for this behaviour is the role of wax ‘bricks’ in building the diffusion barrier. This review brings together crystallographic and microstructural research to highlight the variety of crystalline, disordered, and amorphous structural features known in waxes. We trace two predominant research routes applied to leaf waxes: one directed at simplified waxes but with highly detailed descriptions of molecular packing and a second focused on the diffusion characteristics of the complex system of the cuticle and its multicomponent wax compositions. Bringing these routes together will develop sufficiently complex but tractable structural models for waxes, often dominated by a single or a few components in common crop plants. A complete description of leaf wax function will enable ways to control diffusion through the development of targeted interventions for drought tolerance
A generalized MILP framework for plant-level decarbonization
Get PDFEnergy-intensive plants must navigate technology, fuel-price, and policy uncertainty when selecting least-cost decarbonization pathways. We develop a two-stage mixed-integer linear programming (MILP) framework for industrial decarbonization planning that co-optimizes multi-technology capacity expansion and commissioning schedules with hourly site-energy dispatch, while explicitly modeling emissions-allowance procurement and intertemporal banking under an emissions trading system (ETS). The formulation combines multi-decadal investment decisions to hourly operations; includes an allowance-accounting module for ETS-consistent compliance cost calculation with banking; represents correlated trajectories for grid-carbon intensity, fuel and electricity prices, and ETS design; and incorporates time-varying technology costs for electrification, hydrogen, carbon capture and storage (CCS), and bio-energy. We demonstrate the framework on a UK epoxy-resin facility (2025–2055) under five market–policy scenarios to illustrate how scenario-driven stress-testing alters technology choice and timing. Results show that electrification is least-cost/lowest-emissions only if grid intensity falls below 50 g CO
kWh−1 by 2035; a slower trajectory increases cumulative emissions by up to 745 kt CO2. A carbon-price corridor alone is insufficient to close the green-fuel cost premium, motivating long-dated hedging instruments (e.g., power purchase agreements and forward/swap positions) to reduce exposure to price volatility. Allowing credit banking enables additional cost-effective abatement (up to 110 kt CO2) by valuing early over-compliance, whereas prohibiting banking increases compliance cost and weakens the cost–emissions trade-off. Overall, the framework provides a practical, scenario-driven tool for regulators and operators to evaluate robust industrial decarbonization pathways
Recent Advances in the Relationship between Stock Liquidity and Informed Trading
Get PDFThis study examines the relationship between informed trading and stock liquidity in automated markets with high-frequency trading. Using a dataset of S&P 500 firms, we find that informed trading enhances liquidity in short timeframes (daily and weekly) by increasing trading volume and market depth. However, this effect diminishes over longer timeframes (monthly, quarterly, and yearly), indicating that the liquidity benefits of informed trading are transient. Additionally, our findings highlight the varying effectiveness of liquidity measures across different data frequencies. High-frequency measures (Spread and Effective Spread) capture short-term liquidity fluctuations more effectively, while low-frequency measures (e.g., Amihud’s illiquidity measure) provide better insights into long-term liquidity trends
Evidencing improvement in examiner calibration in OSCEs
No full textIn developing and administering OSCE-type assessments, institutions can spend significant resources training examiners and designing stations/scoring instruments in attempts to ensure that they are well-calibrated. This paper, situated in the context of a high-stakes OSCE for international medical graduates wanting to work in the national health service in the UK, employs a recently developed quantitative measure of examiner calibration to identify which stations show relatively high and low average degrees of calibration between examiners. Using documentary analysis of station materials, we then investigate these stations qualitatively to better understand what factors might drive better calibration as stations develop and design elements change over time. We find that those stations that are better calibrated are typically newer with more detailed and relevant scoring guidance and support materials, whilst there is little evidence that the nature of the task(s) or other contextual factors are important in determining calibration levels. In this work, we provide strong evidence of how key developments in station design, the quality of support materials and enhanced examiner training practices can succeed in improving degrees of calibration in OSCE stations – and suggest ways that all institutions might improve their practices in this regard
Transforming written assessment design to embrace AI: what needs to be changed to encourage higher-order critical thinking
No full textUncritical use of generative AI (GenAI) responses is a major concern among educators as it can hinder knowledge development, creativity, critical thinking and academic misconduct. To mitigate these repercussions, current discussions predominantly focus on changing assessment methods or policing students’ use of GenAI, which greatly shapes students’ GenAI use, for better or for worse. Few studies have examined how different assessment designs impact the way students use GenAI for coursework and the quality of GenAI-assisted writing. This study uncovered the relationships between assessment design and critical thinking in students’ writing through analysing lecturer feedback on 51 postgraduate ChatGPT-assisted students’ assignments across fourteen modules and assessment information related to the assignments. Results revealed that word limits, genres, information about organisational structures, and cognitive domains required by assessments significantly determined students’ critical thinking performance in their disciplinary writing. Based on the results, we suggested (a) setting word limits based on task complexity rather than module credits, (b) designing integrated tasks with varied assessment methods to encourage critical thinking and knowledge development, (c) providing an appropriate amount of structural information to create space for critical thinking and (d) explicitly signalising cognitive domains required by assessments to address GenAI’s impact on writing. We further encourage educators to critically reflect on the existing assessment guidance and practices to design assessments that cultivate critical AI users in an AI-empowered world
Methods of engaging interest‐holders in healthcare evidence syntheses: a scoping review
Get PDFIntroduction
Engaging interest-holders in health care evidence syntheses may make evidence syntheses more relevant, useful, and accessible. However, the best way(s) to engage interest-holders within the evidence synthesis process remain unknown. A previous scoping review collated 291 publications that reported interest-holder engagement in evidence syntheses, but conclusions were limited due to poor reporting. In the present scoping review, our aim was to identify and collate up-to-date publications focussed on interest-holder engagement in healthcare evidence syntheses, describe reported methods of engagement, and compare the results with those from the previous review.
Methods
We updated a scoping review, following JBI guidance, using a pre-published protocol that defined all key terminology in this field. We systematically searched five electronic databases (MEDLINE, CINAHL, EMBASE, PsycInfo, and SCOPUS). Searches were conducted from January 2016 to February 2024. Records were imported into Covidence and screened by pairs of independent reviewers, including any publications that reported engagement of interest-holders in evidence syntheses. We extracted and coded key data relating to the evidence synthesis topic and ACTIVE framework domains (who was engaged, when, and in what way). Two reviewers independently made a judgment of the comprehensiveness of the description of methods of engagement, using a “traffic-light” system, coding evidence syntheses with comprehensive descriptions as “green,” brief or partial descriptions as “amber,” and those with few details as “red”; disagreements were resolved through discussion. Additional detailed data relating to the engagement methods were extracted from “green” evidence syntheses. Any disagreements were resolved through discussion. Data were synthesized within tables, and narrative summaries were written to provide an overview of key methods of engaging interest-holders within the identified evidence syntheses.
Results
We identified 302 publications published since the previous review. Most (272/302, 90%) reported interest-holder engagement in a single evidence synthesis; of these, 74% (200/272) engaged patients and/or their carers, while 17% (46/272) engaged other interest-holders only, and the remainder (26/272, 9.6%) was unclear. Over three-quarters of the evidence syntheses were conducted either in the United Kingdom, United States, Canada, or Australia (215/272, 79%). Most often (113/272, 42%), interest-holders were engaged at both the initial (scope and question setting) and final (interpretation of results) review stages (referred to as a “top and tail” approach). Nineteen percent (51/272) were judged to provide a comprehensive (“green”) description of one or more method(s) or approach(es) to engagement in an evidence synthesis, enabling detailed data extraction and description. Most: engaged patients/public members and other interest-holder groups (30/51, 59%); used a “closed” recruitment strategy (30/51, 59%); engaged interest-holders during the stage of interpretation of findings (39/51, 76%); had at least one interest-holder as a co-author (27/51, 52%). Interest-holders generally attended meetings at which no formal methods of engagement were used. It was common to engage interest-holders in multiple activities throughout the review process.
Discussion/Conclusion
Our international team from the MuSE consortium has updated a previous scoping review, compiling the latest evidence on interest-holder engagement in evidence syntheses. We collated 302 publications and described the methods of interest-holder engagement reported in 51 evidence syntheses that we judged provided the most comprehensive information. Interest-holders have been involved at all stages of the process, using a wide range of engagement approaches, but with no clear patterns linked to the type or focus of evidence syntheses. Most commonly, patients/public and professional interest-holders were both engaged, but around one-quarter of our examples only engaged patients/public members, and a small number only engaged professional interest-holders. We identified some distinct engagement strategies and have used these to inform a potential decision tool to support the selection of engagement strategies. We propose recommendations in relation to the conduct and reporting of interest-holder engagement in evidence syntheses and future research to advance this field.
Summary
In health care, evidence syntheses bring together the results of research studies to inform clinical practice and policy. Engagement of interest-holders (including patients, public, carers, health professionals, policy makers, and others) in evidence syntheses is thought to make evidence syntheses more useful and usable, but the best ways of engaging interest-holders are not known. We used recognized methods for conducting high-quality research to bring together evidence syntheses that report interest-holders' engagement. We described all aspects of engagement. We found 302 relevant papers that had been published since 2016 (a previous study brought together papers published before 2016). Most papers were from the United Kingdom, the United States, Canada, or Australia. Ninety percent of the papers reported interest-holder engagement in a single evidence synthesis. In three-quarters of these patients and carers were engaged. Fifty-one papers gave a comprehensive description of interest-holder engagement, and we explored these in more detail. This helped us to identify various ways of engaging interest-holders. We brought these different ways together and made a diagram to help people make decisions about how they could plan interest-holder engagement in a future evidence synthesis. Using our findings, we also made some recommendations to help improve future interest-holder engagement in evidence syntheses
Experiences of access to general practice in England: qualitative study and implications for the NHS 10 year plan
Get PDFObjective
To report experiences and views of patients, carers, and staff on access to general practice in England in the context of major government plans to reform NHS services.
Design
Qualitative interview study.
Setting
Patients and carers in Devon, Medway, Blackpool, Luton, and Lancashire, and NHS general practices in the east of England.
Participants
70 interviews with 41 patients and carers and 29 general practice staff, including general practitioners (GPs), nurses and allied health professionals, practice managers, and administrators. Analysis was based on the constant comparative method, with themes mapped to the three shifts—to digital, to community, and to prevention—proposed in the 10 year plan for England.
Results
Patient participants represented 12 ethnic groups and diverse personal and medical characteristics. The three shifts offered some benefits to participants but also introduced new risks and disadvantages. The shift to greater digitisation in general practice (mainly in the form of online appointment booking systems and access to medical information) offered more convenience for some patients and improved efficiencies. The shift did little to resolve the fundamental scarcity of appointments with a GP, however, and it introduced new forms of disadvantage and exclusion while failing to address what patients were often seeking: human connection and empathy with a GP they knew. The shift from hospital to community based services, with GPs working over greater geographical scale in new neighbourhood based models, was perceived by participants to offer greater capacity for appointments but faced constraints including practical challenges to coordination and organisation. New services encompassing larger areas risked patients feeling unrecognised and unknown at their practice and undermining the long term relationships with GPs that patients valued. Prevention efforts, while accepted as important, were seen as challenged by their tendency to fragment care, oversimplified models focused on single diseases, and consuming capacity that could otherwise be used for contacts initiated by patients. Concern about increased workload for staff at general practices was consistently expressed.
Conclusions
Although improving access to general practice is a stated priority in government plans to reform NHS services, the three proposed shifts may not be what patients are seeking or what practices want in order to support their work. The proposals will require careful design, implementation, and evaluation in collaboration with key stakeholders, to ensure they do not undermine continuity of care nor fragment existing services
Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study
Get PDFThis paper presents a case study of Patient and Public Involvement (PPI), in which people shared their ‘lived experience’ as ‘experts’ who manage their blood cancer on a daily basis, within their own environment and social circumstances. The case study is set within an ongoing cohort study that was established in 2004 in the North of England, and currently includes ~ 55,000 newly diagnosed patients (no exclusions), increasing annually by ~ 2,500. Participants are invited to join a Patient Partnership, and if they agree may be asked to take part in PPI. PPI is conducted with selected patients, matched to the research question. It takes place during one-to-one or group consultations (interviews or focus groups), which may occur face-to-face or online, and during the daytime or evening, on a weekday or weekend, to provide various options and promote inclusivity. PPI meetings have generated advice on research priorities, website design and content, and study design and implementation; with more formal collaborations established within funding applications, and Oversight Committee and Sub-Committees. Researchers received practical assistance in preparing clear study paperwork written in plain language, for information leaflets and consent forms, academic papers, and summaries used to share findings on lay-websites and social media sites. Letters of support have also been provided for funding applications. PPI has underpinned the cohort’s ethical and governance approvals; and improved its methods, and the way in which findings are shared. Open Days and other meetings with patients and the public have raised awareness about the cohort and engaged people in the research process. People said they were pleased to take part in PPI and to have the opportunity to give something back. Factors for success were the inclusion of appropriate stakeholders, sufficient reimbursement, feedback on impact, skilled facilitators, and good governance. PPI activities will be strengthened within the cohort over coming years, by significant expansion in members of the Oversight Committee and Sub-Committees, from across the study area, and with an increased focus on underserved communities. Effective PPI requires sufficient time, skills, effort and resources; and it is important to be aware of changes in this rapidly developing area
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