What mechanisms should be used to promote compliance with a proposed instrument relating to marine biodiversity in areas beyond national jurisdiction?

This paper examines the type of compliance and enforcement mechanisms that should be included in proposed instrument to be negotiated under the United Nations Convention on the Law of the Sea in relation to the conservation and sustainable use of marine biodiversity in areas beyond national jurisdiction. The paper also examines the literature as to why states do or do not comply with international law and makes recommendations of compliance and enforcement mechanisms informed by those compliance theories

Stable investment or stable climate? Would New Zealand be in breach of its investment treat obligations if it phased out fossil fuel extraction?

This paper considers the possibility of phasing out fossil fuel extraction in New Zealand. It examines New Zealand’s current relationship with fossil fuels and its legal framework relating to fossil fuel extraction before assessing the remedies available to domestic and foreign investors should fossil fuel extraction be phased out, thereby removing their current rights to extract fossil fuels. The paper concludes that there would no remedy available to domestic investors but there is a possibility that foreign investors could claim compensation pursuant to an investment treaty such as Chapter 9 of Trans-Pacific Partnership Agreement. It was also argued that New Zealand would have arguments to make that it should not have to compensate those investors, including an argument based on a duty under the United Nations Framework Convention on Climate Change for New Zealand to protect its fossil fuel reserves

Generating Real-World Impact from Academic Research: Experience Report from a University Impact Hub.

This paper presents an experience report of Digital Creativity Labs (DC Labs), an ‘impact hub’ created at the University of York in the UK. The impact hub is dedicated to fostering impactful collaborations between practitioners and researchers in the world of games, interactive media and the rich space in which these converge. In this paper we describe how the impact hub works and the activities undertaken to build a culture of academic entrepreneurship that allows academic researchers to understand the goals of external partners and align with them. We also present some illustrative case studies before proposing initial lessons learned from experiences of the Lab. Multi-disciplinary academic teams can generate excellent impact, but this doesn’t happen automatically. A culture of entrepreneurship is needed, and opportunities must be created for researchers to tackle problems jointly. Effort must be put into maintaining collaborations with partners

Values-Led Design Cards: Building Ethically Engaged Archaeology and Heritage Experiences

The agenda for an engaged and impactful archaeology has been set out emphatically in a variety of recent reports, positioning archaeology and heritage as important sources of public value and social benefit. While many ascribe to these aims, how to put them into practice in concrete terms remains a real challenge. Tools, methods and methodologies developed for the wider research community as it engages with the “impact agenda” at large have been adapted and applied in archaeological and heritage practice with variable success. In this paper, we discuss the creation of a values-led, card-based design toolkit and the considerations involved in customising it for use by archaeology and heritage sector practitioners. We evaluate reflexive feedback from participants in a toolkit testing workshop, together with our own reflections on the workshop experience. Building on these, we assess the potential and limitations of the toolkit and its underpinning values-led design theory to generate critically engaged archaeological and heritage experiences

Parents’ and children's views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis

Newborn bloodspot screening (NBS) is currently undergoing a ‘revolution’ (Spiekerkoetter et al., 2023). The development of new therapies (Vockley et al., 2023) and the piloting of whole genome sequencing in healthy newborns (e.g. Newborn Genomes Programme, UK, BabySeq USA) are challenging NBS practice and policy, as well as the Wilson & Jungner criteria (Wilson & Jungner, 1968) that underpin them (Andermann et al., 2008; Rahimzadeh et al., 2022; Vears et al., 2023). The capacity to screen for large numbers of variants simultaneously and generate data with potential relevance across the life course, and for family members beyond the screened infant, has prompted widespread discussion of the benefits (e.g., early identification and treatment of screened conditions) and harms (e.g., identification of variants of unknown clinical significance) that such high throughput screening programmes bring (Bick et al., 2022; Remec et al., 2021; Spiekerkoetter et al., 2023; Tluczek et al., 2022)

Stakeholder views of the proposed introduction of next generation sequencing into the cystic fibrosis screening protocol in England

The project aimed to gather, analyze and compare views of stakeholders on the proposed UK cystic fibrosis (CF) screening protocol incorporating next generation sequencing (NGS). The study design was based on principles of Q-methodology with a willingness to pay exercise. Par-ticipants were recruited from 12 CF centers in the UK. Twenty-eight adults with experience of CF (parents of children with CF [n=21], parents of children with CF transmembrane conductance regulator (CFTR)-related metabolic syndrome (CRMS)/CF Screen Positive – Inconclusive Diag-nosis (CFSPID), an uncertain outcome [n=3] and adults with CF [n=4]), and nine health profes-sionals involved in caring for children with CF. Parents and health professionals expressed a preference for a sensitive approach to NGS. This was influenced by the importance participants placed on not missing any children with CF via screening and the balance of harm between missing a case of CF compared to picking up more children with an uncertain outcome (CRMS/CFSPID). Given the preference for a sensitive approach, the need for adequate explana-tions about potential outcomes including uncertainty (CFSPID) at the time of screening was em-phasized. More research is needed to inform definitive guidelines for managing children with an uncertain outcome following CF screening

National priority setting partnership using a Delphi consensus process to develop neonatal research questions suitable for practice-changing randomised trials in the UK

BACKGROUND: The provision of neonatal care is variable and commonly lacks adequate evidence base; strategic development of methodologically robust clinical trials is needed to improve outcomes and maximise research resources. Historically, neonatal research topics have been selected by researchers; prioritisation processes involving wider stakeholder groups have generally identified research themes rather than specific questions amenable to interventional trials. OBJECTIVE: To involve stakeholders including parents, healthcare professionals and researchers to identify and prioritise research questions suitable for answering in neonatal interventional trials in the UK. DESIGN: Research questions were submitted by stakeholders in population, intervention, comparison, outcome format through an online platform. Questions were reviewed by a representative steering group; duplicates and previously answered questions were removed. Eligible questions were entered into a three-round online Delphi survey for prioritisation by all stakeholder groups. PARTICIPANTS: One hundred and eight respondents submitted research questions for consideration; 144 participants completed round one of the Delphi survey, 106 completed all three rounds. RESULTS: Two hundred and sixty-five research questions were submitted and after steering group review, 186 entered into the Delphi survey. The top five ranked research questions related to breast milk fortification, intact cord resuscitation, timing of surgical intervention in necrotising enterocolitis, therapeutic hypothermia for mild hypoxic ischaemic encephalopathy and non-invasive respiratory support. CONCLUSIONS: We have identified and prioritised research questions suitable for practice-changing interventional trials in neonatal medicine in the UK at the present time. Trials targeting these uncertainties have potential to reduce research waste and improve neonatal care

Expert panel process to optimise the design of a randomised controlled trial in chronic rhinosinusitis (the MACRO programme).

BACKGROUND: MACRO (Defining best Management for Adults with Chronic RhinOsinusitis) is an NIHR-funded programme of work designed to establish best practice for adults with chronic rhinosinusitis (CRS). The 7-year programme comprises three consecutive workstreams, designed to explore NHS care pathways through analysis of primary and secondary data sources, and to undertake a randomised controlled trial to evaluate a longer-term course of macrolide antibiotics and endoscopic sinus surgery for patients with CRS. A number of outstanding elements still required clarification at the funding stage. This paper reports an expert panel review process designed to agree and finalise the MACRO trial design, ensuring relevance to patients and clinicians whilst maximising trial recruitment and retention. METHODS: An expert panel, consisting of the MACRO Programme Management Group, independent advisors, and patient contributors, was convened to review current evidence and the mixed-method data collected as part of the programme, and reach agreement on MACRO trial design. Specifically, agreement was sought for selection of macrolide antibiotic, use of orally administered steroids, inclusion of CRS phenotypes (with/without nasal polyps), and overall trial design. RESULTS: A 12-week course of clarithromycin was agreed as the main trial comparator due to its increasing use as a first- and second-line treatment for patients with CRS, and the perceived need to establish its role in CRS management. Orally administered steroids will be used as a rescue medication during the trial, rather than routinely either pre or post trial randomisation, to limit any potential effects on surgical outcomes and better reflect current UK prescribing habits. Both CRS phenotypes will be included in a single trial to ensure that the MACRO trial is both pragmatic and generalisable to primary care. A modified, three-arm trial design was agreed after intense discussions and further exploratory work. Inclusion criteria were amended to ensure that the patients recruited would be considered eligible for the treatment offered in the trial due to having already received appropriate medical therapy as deemed suitable by their ENT surgeon. A proposed 6-week run-in period prior to randomisation was removed due to the new criteria prior to randomisation. CONCLUSION: The expert panel review process resulted in agreement on key elements and an optimal design for the MACRO trial, considered most likely to be successful in terms of both recruitment potential and ability to establish best management of patients with CRS

Fanny Copeland and the geographical imagination

Raised in Scotland, married and divorced in the English south, an adopted Slovene, Fanny Copeland (1872 – 1970) occupied the intersection of a number of complex spatial and temporal conjunctures. A Slavophile, she played a part in the formation of what subsequently became the Kingdom of Yugoslavia that emerged from the First World War. Living in Ljubljana, she facilitated the first ‘foreign visit’ (in 1932) of the newly formed Le Play Society (a precursor of the Institute of British Geographers) and guided its studies of Solčava (a then ‘remote’ Alpine valley system) which, led by Dudley Stamp and commended by Halford Mackinder, were subsequently hailed as a model for regional studies elsewhere. Arrested by the Gestapo and interned in Italy during the Second World War, she eventually returned to a socialist Yugoslavia, a celebrated figure. An accomplished musician, linguist, and mountaineer, she became an authority on (and populist for) the Julian Alps and was instrumental in the establishment of the Triglav National Park. Copeland’s role as participant observer (and protagonist) enriches our understanding of the particularities of her time and place and illuminates some inter-war relationships within G/geography, inside and outside the academy, suggesting their relative autonomy in the production of geographical knowledge

Clarithromycin and endoscopic sinus surgery for adults with chronic rhinosinusitis with and without nasal polyps: study protocol for the MACRO randomised controlled trial.

BACKGROUND: Chronic rhinosinusitis (CRS) is a common source of ill health; 11% of UK adults reported CRS symptoms in a worldwide population study. Guidelines are conflicting regarding whether antibiotics should be included in primary medical management, reflecting the lack of evidence in systematic reviews. Insufficient evidence to inform the role of surgery contributes to a fivefold variation in UK intervention rates. The objective of this trial is to establish the comparative effectiveness of endoscopic sinus surgery (ESS) or a prolonged course of antibiotics (clarithromycin) in adult patients with CRS in terms of symptomatic improvement and costs to the National Health Service compared with standard medical care (intranasal medication) at 6 months. METHODS/DESIGN: A three-arm parallel-group trial will be conducted with patients who remain symptomatic after receiving appropriate medical therapy (either in primary or secondary care). They will be randomised to receive: (1) intranasal medication plus ESS, (2) intranasal medication plus clarithromycin (250 mg) or (3) intranasal medication plus a placebo. Intranasal medication (current standard medical care) is defined as a spray or drops of intranasal corticosteroids and saline irrigations. The primary outcome measure is the SNOT-22 questionnaire, which assesses disease-specific health-related quality of life. The study sample size is 600. Principal analyses will be according to the randomised groups irrespective of compliance. The trial will be conducted in at least 16 secondary or tertiary care centres with an internal pilot at six sites for 6 months. DISCUSSION: The potential cardiovascular side effects of macrolide antibiotics have been recently highlighted. The effectiveness of antibiotics will be established through this trial, which may help to reduce unnecessary usage and potential morbidity. If ESS is shown to be clinically effective and cost-effective, the trial may encourage earlier intervention. In contrast, if it is shown to be ineffective, then there should be a significant reduction in surgery rates. The trial results will feed into the other components of the MACRO research programme to establish best practice for the management of adults with CRS and design the ideal patient pathway across primary and secondary care. TRIAL REGISTRATION: ISRCTN36962030 . Registered on 17 October 2018