Participating in CaMKIN : impact on patients

Introduction: Managing long-term health conditions is a global challenge, which has necessitated developing innovative ways to deliver patient centred care. Social media allow patients to access and share personal experiences and peer support, with potential to feed back into the patient-centred development and improvement of healthcare services. The Cheshire and Merseyside Kidney Information Network (CaMKIN) was established in 2019 as part of the Kidney Information Network (KIN), providing CKD patients 24-hour online access to information and support regarding their condition. Methods A novel digital method (Vasilica et al., 2021) of a dataset retrieved from a CaMKIN patient Facebook micro-community (1,119 posts and 5,266 comments), complemented by a survey (61 CaMKIN members). The digital methods steps involved a framework analysis to create themes and subthemes, directed analysis of data, familiarisation and sense making. Findings Analysis of data identified four major themes and an additional 13 subthemes of impact. Patients used the group to ‘improve understanding of their condition’ (theme 1) through sharing useful information, accessing information from lived experiences and organizing Q&A with health professionals. The micro-community formed a peer support network with both, in person and online peer to peer support. This support extended to ‘encouragement of self-management of health’ (theme 2), including managing diet and fitness. Group members created their own healthy choices weight loss accountability group, adopting a supportive ‘weight watchers’ style. They encouraged each other to take proactive steps in self-managing their health recommending people to contact renal team or ring emergency line where necessary. CaMKIN positively contributed to ‘improved health and wellbeing outcomes’ (theme 3), by providing a safe space to air frustrations, quell anxieties, and support each other’s mental health. This was important during the COVID_19 pandemic. CaMKIN provided patients a ‘safe environment, outside clinical settings’ (theme 4), to share and receive health information related to their kidney disease or treatment. Throughout the pandemic, the group discussed or clarified information (with professionals on the network), reducing demand on the local services through the self-organisation that occurred within the group. Survey results reinforced the Facebook dataset findings; most respondents benefited from access to health care information (86.9 %), which made them feel more informed about their condition (77.1%). Patients received valuable support from peers (75.4%). Almost half of respondents agreed that it reduced isolation and it contributed to management of mental health (48.8%). Conclusion This innovative micro-community helps CKD patients understand their condition better and improve health awareness through information sharing (peer and professionally developed) and peer support that contribute to increased self-management. Demonstrated through self-reported mechanisms, CaMKIN improved mental health and reduced social isolation. During the pandemic it offered patients a safe environment to develop understanding of the volatile situation to manage their health safely. The data provides insight into an untapped opportunity, recommendations include utilising the CAMKIN to further develop service provision and communication between hospitals and patients. Further research is required to roll out and evaluate embedding KIN into local service provision, and developing a patient network at a regional and national level

Application of holistic liquid chromatography-high resolution mass spectrometry based urinary metabolomics for prostate cancer detection and biomarker discovery

Human exhibit wide variations in their metabolic profiles because of differences in genetic factors, diet and lifestyle. Therefore in order to detect metabolic differences between individuals robust analytical methods are required. A protocol was produced based on the use of Liquid Chromatography- High Resolution Mass Spectrometry (LC-HRMS) in combination with orthogonal Hydrophilic Interaction (HILIC) and Reversed Phase (RP) liquid chromatography methods for the analysis of the urinary metabolome, which was then evaluated as a diagnostic tool for prostate cancer (a common but highly heterogeneous condition). The LC-HRMS method was found to be robust and exhibited excellent repeatability for retention times (0.9. In addition, using the receiver operator characteristics (ROC) test, the area under curve (AUC) for the combination of the four best characterised biomarker compounds was 0.896. The four biomarker compounds were also found to differ significantly (

Protocol for the development of a multidisciplinary clinical practice guideline for the care of patients with chronic subdural haematoma

Introduction: A common neurosurgical condition, chronic subdural haematoma (cSDH) typically affects older people with other underlying health conditions. The care of this potentially vulnerable cohort is often, however, fragmented and suboptimal. In other complex conditions, multidisciplinary guidelines have transformed patient experience and outcomes, but no such framework exists for cSDH. This paper outlines a protocol to develop the first comprehensive multidisciplinary guideline from diagnosis to long-term recovery with cSDH. Methods: The project will be guided by a steering group of key stakeholders and professional organisations and will feature patient and public involvement. Multidisciplinary thematic working groups will examine key aspects of care to formulate appropriate, patient-centered research questions, targeted with evidence review using the GRADE framework. The working groups will then formulate draft clinical recommendations to be used in a modified Delphi process to build consensus on guideline contents. Conclusions: We present a protocol for the development of a multidisciplinary guideline to inform the care of patients with a cSDH, developed by cross-disciplinary working groups and arrived at through a consensus-building process, including a modified online Delphi.</p

A blood atlas of COVID-19 defines hallmarks of disease severity and specificity.

Treatment of severe COVID-19 is currently limited by clinical heterogeneity and incomplete description of specific immune biomarkers. We present here a comprehensive multi-omic blood atlas for patients with varying COVID-19 severity in an integrated comparison with influenza and sepsis patients versus healthy volunteers. We identify immune signatures and correlates of host response. Hallmarks of disease severity involved cells, their inflammatory mediators and networks, including progenitor cells and specific myeloid and lymphocyte subsets, features of the immune repertoire, acute phase response, metabolism, and coagulation. Persisting immune activation involving AP-1/p38MAPK was a specific feature of COVID-19. The plasma proteome enabled sub-phenotyping into patient clusters, predictive of severity and outcome. Systems-based integrative analyses including tensor and matrix decomposition of all modalities revealed feature groupings linked with severity and specificity compared to influenza and sepsis. Our approach and blood atlas will support future drug development, clinical trial design, and personalized medicine approaches for COVID-19

Beethoven’s Large-Scale Works outside the Concert Hall: Toward a Digital Representation of Domestic Arrangements

The dissemination of Beethoven’s large-scale works—as usual in the nineteenth century—occurred mainly in diverse forms of domestic arrangements, not in concert hall performances. This fundamental musical repertoire has, up until now, only scarcely been studied. Arrangements challenge traditional definitions in several ways: They enlarge our concept of work, which is usually connected to a composer’s authority; they shed light on other agents like arrangers, publishers, and performers; and—because of the widespread popularity of domestic music making—they reached a much broader audience, as public concerts were rare at the time. Additionally, arrangements with varied scorings engaged amateurs, including female musicians. Therefore, arrangements could build bridges between different national, geographical, and socially distant areas. Lastly, vocal arrangements could add new meanings to a work of “absolute” music. Despite the fact that the authors of the Beethoven thematic catalog (Dorfmüller et al. 2014) listed known arrangements up to 1830, many more sources can be traced—not to mention later adaptations. For documenting and analyzing this immensely rich repertoire, historical approaches need to be complemented with the new possibilities offered by digital frameworks and tools on three different levels: the documentation of the arrangements, the encoding of the music, and the presentation of the results. We will shed new light on this historically highly relevant repertoire and the opportunities for its study using digital methods: 1. Christina Bashford will focus on hidden “musicking,” using Beethoven in the Victorian home as an example. Based on a group of overlooked archival sources, this introductory talk will discuss what can be learned about the works being played; the social, musical, and demographic profile of the performers and listeners; the responses engendered; and the broader significance that this “musicking” may have had in how conceptions of Beethoven came to be constructed in Britain. 2. The following case study by Lisa Rosendahl and Elisabete Shibata will consider musical and pedagogical ambitions in piano trio and vocal arrangements of the Allegretto in Beethoven’s Seventh Symphony, op. 92, one of the most popular Beethoven movements. 3. David Lewis’s contribution will situate a wide variety of domestic arrangements between general characteristics and individual solutions. 4. The challenge of categorizing the material will be discussed in in Andrew Hankinson’s and Laurent Pugin’s contribution, which considers arrangements, collections, and the work from the perspective of cataloguing and the use of metadata. 5. Richard Sänger will demonstrate how the VideAppCorr tool, developed by the project “Beethovens Werkstatt,” includes perspectives of arrangements, using Beethoven’s piano version of the Große Fuge, op. 134, as an example. 6. This will lead to suggestions for harmonizing models. Johannes Kepper and Mark Saccomano will discuss challenges of sharing concept, data, and tools between digital projects 7. Concluding, Kevin Page will address the Music Encoding and Linked Data framework perspective and demonstrate how the tools used by the presented research project will widen our understanding of the repertoire in question. The seven lightning talks (ten to twelve minutes each) will be followed by a general discussion, chaired by the organizer

The statistical results for biomarkers surviving testing against a new cohort of patients.

a<p>: identified by accurate mass and MS² fragmentation.</p>b<p>: only identified by accurate mass in the in-house database.</p>c<p>: only elemental composition predicted formula (<3 ppm).</p

PCA score plots with different normalisation methods.

<p>Cancer subjects are labelled in red, controls in blue and QCs in green. The vector from diamond to 5-point star is labelled in black, to 4-point star in green and to inverted triangle in purple. (A–C) Normalisation to creatinine, MSTUS and osmolality respectively. (D) raw data without normalisation.</p

LC-HRMS/MS results of isomers of C₅H₁₀N₂O₃.

<p>Extracted ion chromatograms under 4 different LC-HRMS conditions (A) and the interpretation of their MS² fragmentations (B).</p

Clinicopathological characteristics of the tumor patients.

<p><b>GS = Gleason Score T = T stages N = N stages M = M stages.</b></p