Networks, the clear blue water of change or the "wave tops" on the sea?

In this short article we consider leadership in the context of managing increasingly complex networks. Our approach draws on multiple perspectives that support the use of collective approaches to leadership and the processes that underpin them. We highlight the importance of creating spaces for co-productive work and the use of rapid insight generation to accelerate learning and impact based on our experience of working on complex change programs.

The relevance of pedigrees in the conservation genomics era.

Over the past 50 years conservation genetics has developed a substantive toolbox to inform species management. One of the most long-standing tools available to manage genetics-the pedigree-has been widely used to characterize diversity and maximize evolutionary potential in threatened populations. Now, with the ability to use high throughput sequencing to estimate relatedness, inbreeding, and genome-wide functional diversity, some have asked whether it is warranted for conservation biologists to continue collecting and collating pedigrees for species management. In this perspective, we argue that pedigrees remain a relevant tool, and when combined with genomic data, create an invaluable resource for conservation genomic management. Genomic data can address pedigree pitfalls (e.g., founder relatedness, missing data, uncertainty), and in return robust pedigrees allow for more nuanced research design, including well-informed sampling strategies and quantitative analyses (e.g., heritability, linkage) to better inform genomic inquiry. We further contend that building and maintaining pedigrees provides an opportunity to strengthen trusted relationships among conservation researchers, practitioners, Indigenous Peoples, and Local Communities.

Our experience in developing and operating the Airway Intervention Registry for Recurrent Respiratory Papillomatosis (AIR-RRP): national data collection [version 2; peer review: 2 approved].

Recurrent respiratory papillomatosis (RRP) is characterised by benign wart-like growths in the respiratory tract caused by the human papillomavirus (HPV). These warts vary in size and grow quickly, causing voice changes and airway obstruction. Whilst the condition is rare, RRP is more common and aggressive in children. There is currently no curative treatment for HPV, therefore RRP is managed by maintaining a safe airway and a serviceable voice by repeated surgery to remove the growths. A lack of specific diagnostic codes prevents reliable case ascertainment of RRP from routine administrative databases such as Hospital Episode Statistics. In 2017 a cross-sectional survey identified 918 RRP patients in the UK, half of whom had received surgical intervention for RRP in the previous 12 months with 16 different interventions. Randomised controlled trials for RRP interventions are difficult due to the rarity of the disease, variation in severity and progression and non-standard care across the NHS. Consequently, there is a lack of definitive efficacy and safety evidence. The only national guidance for RRP interventions is "Radiofrequency cold ablation for respiratory papillomatosis" (NICE IPG434, 2017) which recommended further data collection due to lack of evidence. However, due to the wide variation in RRP management across the NHS, clinical opinion favoured that any data collection should include a comparison of safety and efficacy of all RRP interventions in order to advise which improved patient outcomes and quality of life. To address lack of evidence, and inform the future care of RRP patients, we developed a registry and used it to collect real-world data from patients receiving treatment for RRP in NHS hospitals across the UK. The purpose of this paper is to share lessons learned from this national data collection exercise to inform future clinical registry development.

"Burns Behind Bars": A 10-year review and cost analysis of burn injuries in prison inmates presenting to a regional burns centre, and the role of the burns outreach service.

INTRODUCTION: From 85348 inmates in England and Wales, over 26,000 incidents of assault and 40,000 of self-harm were reported from within prisons in 2016. This study focuses primarily on burn injuries in prison, determining the predominant aetiology as well as clinical outcomes of these injuries. METHODS: Data was retrieved retrospectively and a case series performed, including all burns referred from regional prisons to our centre from 2007 to 2017 and comprising patient demographics, mechanism of injury, total body surface area affected, management, and outcome. Cost analysis of care was conducted using a previously published framework. RESULTS: 18 cases from three regional prisons were recorded, with 67% from a single prison. Referrals rose exponentially over time, with 44% occurring in 2017. 94% were scald burns, and 56% secondary to assault, primarily through the use of kettles and mostly targeting the face and trunk. The mean TBSA of burn was 2.89% (<1-8%), and 80% received first aid. 72.2% were admitted to hospital for an average of 4 days. All burns were managed nonoperatively with dressings and underwent on average 2 outpatient reviews (1-8). DISCUSSION: The disproportionate spread of referrals across the prisons correlates partly with the respective populations, but may also represent contrasting medical provisions. The recurring method of assault reflects the relative ease of access to hot water as a harmful agent, predominantly presenting with scalds affecting more critical areas, and with concurrent physical trauma in nearly half of cases which presents management challenges. CONCLUSION: Targeted education is recommended to reduce the incidence and ensure adequate management of burns in prison, referrals for which are demonstrably rising. Accordingly, the Burns Outreach team can provide training to in-house prison health staff and review referrals to specialist Burns services, aiming to ensure equitable care while alleviating costs associated with transfer to and management in hospital.

A comparison of pedigree, genetic and genomic estimates of relatedness for informing pairing decisions in two critically endangered birds: Implications for conservation breeding programmes worldwide.

Conservation management strategies for many highly threatened species include conservation breeding to prevent extinction and enhance recovery. Pairing decisions for these conservation breeding programmes can be informed by pedigree data to minimize relatedness between individuals in an effort to avoid inbreeding, maximize diversity and maintain evolutionary potential. However, conservation breeding programmes struggle to use this approach when pedigrees are shallow or incomplete. While genetic data (i.e., microsatellites) can be used to estimate relatedness to inform pairing decisions, emerging evidence indicates this approach may lack precision in genetically depauperate species, and more effective estimates will likely be obtained from genomic data (i.e., thousands of genome-wide single nucleotide polymorphisms, or SNPs). Here, we compare relatedness estimates and subsequent pairing decisions using pedigrees, microsatellites and SNPs from whole-genome resequencing approaches in two critically endangered birds endemic to New Zealand: kaki/black stilt (Himantopus novaezelandiae) and kakariki karaka/orange-fronted parakeet (Cyanoramphus malherbi). Our findings indicate that SNPs provide more precise estimates of relatedness than microsatellites when assessing empirical parent-offspring and full sibling relationships. Further, our results show that relatedness estimates and subsequent pairing recommendations using PMx are most similar between pedigree- and SNP-based approaches. These combined results indicate that in lieu of robust pedigrees, SNPs are an effective tool for informing pairing decisions, which has important implications for many poorly pedigreed conservation breeding programmes worldwide.

Identifying patient concerns during consultations in tertiary burns services: development of the Adult Burns Patient Concerns Inventory.

OBJECTIVES: Identifying the issues and concerns that matter most to burns survivors can be challenging. For a number of reasons, but mainly relating to patient empowerment, some of the most pressing concerns patients may have during a clinical encounter may not naturally be the focal point of that encounter. The Patient Concerns Inventory (PCI) is a tried and tested concept initially developed in the field of head and neck cancer that empowers patients during a clinical encounter through provision of a list of prompts that allows patients to self-report concerns prior to consultation. The aim of this study was to develop a PCI for adult burns patients. DESIGN: Content for the PCI was generated from three sources: burns health-related quality of life tools, thematic analysis of one-to-one interviews with 12 adult burns patients and 17 multidisciplinary team (MDT) members. Content was refined using a Delphi consensus technique, with patients and staff members, using SurveyMonkey. SETTING: Within outpatient secondary care. PARTICIPANTS: Twelve adult burns patients and MDT members from two regional burns centres. RESULTS: A total of 111 individual items were generated from the three sources. The Delphi process refined the total number of items to 58. The main emergent domains were physical and functional well-being (18 items), psychological, emotional and spiritual well-being (22 items), social care and social well-being (7 items) and treatment-related concerns (11 items). CONCLUSIONS: The Adult Burns Patient Concerns Inventory is a 58-item, holistic prompt list, designed to be used in the outpatient clinic. It offers a new tool in burn care to improve communication between healthcare professionals and patients, empowering them to identify their most pressing concerns and hence deliver a more focused and targeted patient-centred clinical encounter.

Reference Genomes from Distantly Related Species Can Be Used for Discovery of Single Nucleotide Polymorphisms to Inform Conservation Management.

Threatened species recovery programmes benefit from incorporating genomic data into conservation management strategies to enhance species recovery. However, a lack of readily available genomic resources, including conspecific reference genomes, often limits the inclusion of genomic data. Here, we investigate the utility of closely related high-quality reference genomes for single nucleotide polymorphism (SNP) discovery using the critically endangered kaki/black stilt (Himantopus novaezelandiae) and four Charadriiform reference genomes as proof of concept. We compare diversity estimates (i.e., nucleotide diversity, individual heterozygosity, and relatedness) based on kaki SNPs discovered from genotyping-by-sequencing and whole genome resequencing reads mapped to conordinal (killdeer, Charadrius vociferus), confamilial (pied avocet, Recurvirostra avosetta), congeneric (pied stilt, Himantopus himantopus) and conspecific reference genomes. Results indicate that diversity estimates calculated from SNPs discovered using closely related reference genomes correlate significantly with estimates calculated from SNPs discovered using a conspecific genome. Congeneric and confamilial references provide higher correlations and more similar measures of nucleotide diversity, individual heterozygosity, and relatedness. While conspecific genomes may be necessary to address other questions in conservation, SNP discovery using high-quality reference genomes of closely related species is a cost-effective approach for estimating diversity measures in threatened species.

Evaluating an outreach service for paediatric burns follow up.

Complications following paediatric burns are well documented and care needs to be taken to ensure the appropriate follow up of these patients. Historically this has meant follow up into adulthood however this is often not necessary. The centralisation of burns services in the UK means that patients and their parents may have to travel significant distances to receive this follow up care. To optimise our burns service we have introduced a burns outreach service to enable the patients to be treated closer to home. The aim of this study is to investigate the impact of the introduction of the burns outreach service and within this environment define the optimum length of time needed to follow up these patients. A retrospective analysis was carried out of 100 consecutive paediatric burns patients who underwent surgical management of their burn. During the follow up period there were 43 complications in 32 patients (32%). These included adverse scarring (either hypertrophic or keloid), delayed healing (taking >1 month to heal) and contractures (utilising either splinting or surgical correction). Fifty-nine percent of these complications occurred within 6 months of injury and all occurred within 18 months. Size of burn was directly correlated to the risk of developing a complication. The outreach service reduced the distance the patient needs to travel for follow up by more than 50%. There was also a significant financial benefit for the service as the follow up clinics were on average 50% cheaper with burns outreach than burns physician. Burns outreach is a feasible service that not only benefits the patients but also is cheaper for the burns service. The optimum length of follow up for paediatric burns in 18 months, after which if there have not been any complications they can be discharged.

WONCA Europe 2009: reflections and personal highlights.

WHY THIS MATTERS TO US: In April 2009 we launched the RCGP Junior International Committee, the UK representative body to the Vasco da Gama Movement. Since then we have worked hard to establish a network of UK trainees and junior GPs with an interest in international primary care, as well as promote international exchange and research. This year's WONCA Europe conference was a great success for the group with the presence of a strong UK contingent. We hope to repeat this success next year and inspire an even greater number of trainees and junior GPs to take part in international conferences and clinical exchange.

Randomised controlled trial of magnetic bracelets for relieving pain in osteoarthritis of the hip and knee.

OBJECTIVE: To determine the effectiveness of commercially available magnetic bracelets for pain control in osteoarthritis of the hip and knee. DESIGN: Randomised, placebo controlled trial with three parallel groups. SETTING: Five rural general practices. PARTICIPANTS: 194 men and women aged 45-80 years with osteoarthritis of the hip or knee. INTERVENTION: Wearing a standard strength static bipolar magnetic bracelet, a weak magnetic bracelet, or a non-magnetic (dummy) bracelet for 12 weeks. MAIN OUTCOME MEASURES: Change in the Western Ontario and McMaster Universities osteoarthritis lower limb pain scale (WOMAC A) after 12 weeks, with the primary comparison between the standard and dummy groups. Secondary outcomes included changes in WOMAC B and C scales and a visual analogue scale for pain. RESULTS: Mean pain scores were reduced more in the standard magnet group than in the dummy group (mean difference 1.3 points, 95% confidence interval 0.05 to 2.55). Self reported blinding status did not affect the results. The scores for secondary outcome measures were consistent with the WOMAC A scores. CONCLUSION: Pain from osteoarthritis of the hip and knee decreases when wearing magnetic bracelets. It is uncertain whether this response is due to specific or non-specific (placebo) effects.