Focus Theme Research Articles

The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: Thirty-sixth adult lung and heart–lung transplantation Report—2019; Focus theme: Donor and recipient size match

This thirty-sixth adult lung and heart–lung transplant report summarizes data from 69,200 adult lung and 4,128 adult heart-lung transplants performed through June 30, 2018 and reported to the International Thoracic Organ Transplant Registry. With each year's report, we now provide more detailed analyses on a particular focus theme important to patient outcomes. Since 2013, these have been donor and recipient age; retransplantation; early graft failure; indication for transplant; allograft ischemic time; and multiorgan transplantation. Although widely accepted as critical to decision making at the time of receipt of an organ donor offer, there is surprisingly little literature outlining current practice and the impact of size (mis-)matching on outcomes. Hence this year's report focuses on an overall theme of donor and recipient size matching. In addition to reporting donor and recipient height and weight difference for all adult lung and heart-lung transplant recipients stratified by transplant type (bilateral or single) and indication, we report historical trends and associations between size match and survival. The Registry's online slide sets include results from additional analyses and complementary information not included in this publication (see https://ishltregistries.org/registries/slides.asp ).

Clinical Snippets.

Experimental DermatologyVolume 28, Issue 4 p. i-i CLINICAL SNIPPETSFree Access Clinical Snippets First published: 29 April 2019 https://doi.org/10.1111/exd.13938AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article. Volume28, Issue4Special Issue: Focus Theme Issue: Skin morphogenesis: Development, regeneration, and evolutionApril 2019Pages i-i RelatedInformation

Crossmedia Flows of Documentary Images and the Transnational Communicative Figuration Surrounding Gestational Surrogacy in India

The article is based on the assumption that documentary films are an important ‘ channel of mediation’ (Strathern, 2002, Journal of Molecular Biology, 319(4), 985–993) that helps make visible the changing configurations of family, kinship and social reproduction. It further assumes that documentary images of egg donors, medical procedures, fertility clinics, delivery or labouring bodies of surrogates, and handing over of a ‘commodified’ newborn baby to the commissioning parents effectively convey the repercussions that gestational surrogacy has for all the medicalised bodies which are involved in the transnational processes of reproduction. Widely circulated and received documentaries such as Google Baby (2009), House of Surrogates (2013), Ma Na Sapna: A Mother’s Dream (2013) or Can We See the Baby Bump Please? (2013) often function as a starting point and major reference for the debate about this complex issue. But while academic or journalistic articles mostly refer to individual films and on the theme in focus, the different context(s) of the medium itself are less reflected upon. Documentary filmmaking is of course always situated in a specific sociopolitical context, and this in turn shapes the way in which the visual medium make us, as non-experts, see and learn. It also forms the basis of our quest for more knowledge and better understanding, that is, in this case of the transnational entanglements in the field of assisted reproductive technologies. In addition to that, like any other medium or media-related practice today, documentary filmmaking is also embedded in profoundly transformed media environments, networks and communicative practices. In order to understand how information and knowledge about split parenthood and gestational surrogacy is mediated to transnational audiences and framed in public discussions, it is thus necessary to shed light on the interconnectedness of different media forms and framings through which the communication around this complex topic has formed. Instead of a close reading of selected documentaries, the article therefore attempts to trace and contextualise the crossmedial and translocal itineraries of three key images and central tropes that have influenced the framing of transnational reproduction and gestational surrogacy in India significantly: (a) the medical authority-cum-media actor (i.e., internationally well-known fertility expert and doctor in charge, Dr Nayana Patel), (b) the surrogacy hostels and dormitories (i.e., the central symbol of constant surveillance and control of surrogates) and (c) the metaphor of ‘rented/hired wombs’ (i.e., the notion of a passive provision of body parts and understanding of gestational surrogacy as active labour).

Spectrum of chronic lung allograft pathology in a mouse minor-mismatched orthotopic lung transplant model.

Chronic lung allograft dysfunction (CLAD) is a fatal condition that limits survival after lung transplantation (LTx). The pathological hallmark of CLAD is obliterative bronchiolitis (OB). A subset of patients present with a more aggressive CLAD phenotype, called restrictive allograft syndrome (RAS), characterized by lung parenchymal fibrosis (PF). The mouse orthotopic single LTx model has proven relevant to the mechanistic study of allograft injury. The minor-alloantigen-mismatched strain combination using C57BL/10(B10) donors and C57BL/6(B6) recipients reportedly leads to OB. Recognizing that OB severity is a spectrum that may coexist with other pathologies, including PF, we aimed to characterize and quantify pathologic features of CLAD in this model. Left LTx was performed in the following combinations: B10→B6, B6→B10, B6→B6. Four weeks posttransplant, blinded pathologic semi-quantitative assessment showed that OB was present in 66% of B10→B6 and 30% of B6→B10 grafts. Most mice with OB also had PF with a pattern of pleuroparenchymal fibroelastosis, reminiscent of human RAS-related pathology. Grading of pathologic changes demonstrated variable severity of airway fibrosis, PF, acute rejection, vascular fibrosis, and epithelial changes, similar to those seen in human CLAD. These assessments can make the murine LTx model a more useful tool for further mechanistic studies of CLAD pathogenesis.

Conceptualizing Professional Commitment-Based School Strategy

Core values inherent in the Finnish comprehensive education system can in many respects be interpreted to cluster and cohere around a Bildung discourse, which is paradoxically seen against the backdrop of the system’s stable high rank in PISA, the hallmark of an outcome discourse. Yet the point is that within the frames of a Bildung discourse, the themes in focus for curricula go beyond basic skills with a similarly strong focus on societal values and culture. At the process level, Finland is more deeply and strongly infused with a policy culture that is more compatible with the Bildung tradition than the Anglo-Saxon outcome discourse—with its core values of organizing and leading for relations and teaching. As noted by Finnish scholars, such cultural traits of the Finnish system are viable and can be interpreted as associated with institutional path dependency, anchored in longstanding agrarian and social-democratic values. The current paper interprets these cultural traits also as manifest at the local level around a school strategy model close to the one characterized as a professional commitment strategy in the early 1990s by the American scholars Susan Rosenholtz and Brian Rowan. The purpose of the paper, however, is to advance this theoretical understanding a step further towards a conceptual model of commitment-based school strategy. This paper is, thus, a pure conceptual piece. To elaborate the early insights from the 1990s further, a case drawn from Helsinki primary school is used as an empirical illustration.

Smart Medical Information Technology for Healthcare (SMITH).

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. “Smart Medical Information Technology for Healthcare (SMITH)” is one of four consortia funded by the German Medical Informatics Initiative (MI-I) to create an alliance of universities, university hospitals, research institutions and IT companies. SMITH’s goals are to establish Data Integration Centers (DICs) at each SMITH partner hospital and to implement use cases which demonstrate the usefulness of the approach. Objectives: To give insight into architectural design issues underlying SMITH data integration and to introduce the use cases to be implemented. Governance and Policies: SMITH implements a federated approach as well for its governance structure as for its information system architecture. SMITH has designed a generic concept for its data integration centers. They share identical services and functionalities to take best advantage of the interoperability architectures and of the data use and access process planned. The DICs provide access to the local hospitals’ Electronic Medical Records (EMR). This is based on data trustee and privacy management services. DIC staff will curate and amend EMR data in the Health Data Storage. Methodology and Architectural Framework: To share medical and research data, SMITH’s information system is based on communication and storage standards. We use the Reference Model of the Open Archival Information System and will consistently implement profiles of Integrating the Health Care Enterprise (IHE) and Health Level Seven (HL7) standards. Standard terminologies will be applied. The SMITH Market Place will be used for devising agreements on data access and distribution. 3LGM 2 for enterprise architecture modeling supports a consistent development process. The DIC reference architecture determines the services, applications and the standards-based communication links needed for efficiently supporting the ingesting, data nourishing, trustee, privacy management and data transfer tasks of the SMITH DICs. The reference architecture is adopted at the local sites. Data sharing services and the market place enable interoperability. Use Cases: The methodological use case “Phenotype Pipeline” (PheP) constructs algorithms for annotations and analyses of patient-related phenotypes according to classification rules or statistical models based on structured data. Unstructured textual data will be subject to natural language processing to permit integration into the phenotyping algorithms. The clinical use case “Algorithmic Surveillance of ICU Patients” (ASIC) focusses on patients in Intensive Care Units (ICU) with the acute respiratory distress syndrome (ARDS). A model-based decision-support system will give advice for mechanical ventilation. The clinical use case HELP develops a “hospital-wide electronic medical record-based computerized decision support system to improve outcomes of patients with blood-stream infections” (HELP). ASIC and HELP use the PheP. The clinical benefit of the use cases ASIC and HELP will be demonstrated in a change of care clinical trial based on a step wedge design. Discussion: SMITH’s strength is the modular, reusable IT architecture based on interoperability standards, the integration of the hospitals’ information management departments and the public-private partnership. The project aims at sustainability beyond the first 4-year funding period.

Data Integration for Future Medicine (DIFUTURE).

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Future medicine will be predictive, preventive, personalized, participatory and digital. Data and knowledge at comprehensive depth and breadth need to be available for research and at the point of care as a basis for targeted diagnosis and therapy. Data integration and data sharing will be essential to achieve these goals. For this purpose, the consortium Data Integration for Future Medicine (DIFUTURE) will establish Data Integration Centers (DICs) at university medical centers. Objectives: The infrastructure envisioned by DIFUTURE will provide researchers with cross-site access to data and support physicians by innovative views on integrated data as well as by decision support components for personalized treatments. The aim of our use cases is to show that this accelerates innovation, improves health care processes and results in tangible benefits for our patients. To realize our vision, numerous challenges have to be addressed. The objective of this article is to describe our concepts and solutions on the technical and the organizational level with a specific focus on data integration and sharing. Governance and Policies: Data sharing implies significant security and privacy challenges. Therefore, state-of-the-art data protection, modern IT security concepts and patient trust play a central role in our approach. We have established governance structures and policies safeguarding data use and sharing by technical and organizational measures providing highest levels of data protection. One of our central policies is that adequate methods of data sharing for each use case and project will be selected based on rigorous risk and threat analyses. Interdisciplinary groups have been installed in order to manage change. Architectural Framework and Methodology: The DIFUTURE Data Integration Centers will implement a three-step approach to integrating, harmonizing and sharing structured, unstructured and omics data as well as images from clinical and research environments. First, data is imported and technically harmonized using common data and interface standards (including various IHE profiles, DICOM and HL7 FHIR). Second, data is preprocessed, transformed, harmonized and enriched within a staging and working environment. Third, data is imported into common analytics platforms and data models (including i2b2 and tranSMART) and made accessible in a form compliant with the interoperability requirements defined on the national level. Secure data access and sharing will be implemented with innovative combinations of privacy-enhancing technologies (safe data, safe settings, safe outputs) and methods of distributed computing. Use Cases: From the perspective of health care and medical research, our approach is disease-oriented and use-case driven, i.e. following the needs of physicians and researchers and aiming at measurable benefits for our patients. We will work on early diagnosis, tailored therapies and therapy decision tools with focuses on neurology, oncology and further disease entities. Our early uses cases will serve as blueprints for the following ones, verifying that the infrastructure developed by DIFUTURE is able to support a variety of application scenarios. Discussion: Own previous work, the use of internationally successful open source systems and a state-of-the-art software architecture are cornerstones of our approach. In the conceptual phase of the initiative, we have already prototypically implemented and tested the most important components of our architecture.

MIRACUM: Medical Informatics in Research and Care in University Medicine.

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Similar to other large international data sharing networks (e.g. OHDSI, PCORnet, eMerge, RD-Connect) MIRACUM is a consortium of academic and hospital partners as well as one industrial partner in eight German cities which have joined forces to create interoperable data integration centres (DIC) and make data within those DIC available for innovative new IT solutions in patient care and medical research. Objectives: Sharing data shall be supported by common interoperable tools and services, in order to leverage the power of such data for biomedical discovery and moving towards a learning health system. This paper aims at illustrating the major building blocks and concepts which MIRACUM will apply to achieve this goal. Governance and Policies: Besides establishing an efficient governance structure within the MIRACUM consortium (based on the steering board, a central administrative office, the general MIRACUM assembly, six working groups and the international scientific advisory board), defining DIC governance rules and data sharing policies, as well as establishing (at each MIRACUM DIC site, but also for MIRACUM in total) use and access committees are major building blocks for the success of such an endeavor. Architectural Framework and Methodology: The MIRACUM DIC architecture builds on a comprehensive ecosystem of reusable open source tools (MIRACOLIX), which are linkable and interoperable amongst each other, but also with the existing software environment of the MIRACUM hospitals. Efficient data protection measures, considering patient consent, data harmonization and a MIRACUM metadata repository as well as a common data model are major pillars of this framework. The methodological approach for shared data usage relies on a federated querying and analysis concept. Use Cases: MIRACUM aims at proving the value of their DIC with three use cases: IT support for patient recruitment into clinical trials, the development and routine care implementation of a clinico-molecular predictive knowledge tool, and molecular-guided therapy recommendations in molecular tumor boards. Results: Based on the MIRACUM DIC release in the nine months conceptual phase first large scale analysis for stroke and colorectal cancer cohorts have been pursued. Discussion: Beyond all technological challenges successfully applying the MIRACUM tools for the enrichment of our knowledge about diagnostic and therapeutic concepts, thus supporting the concept of a Learning Health System will be crucial for the acceptance and sustainability in the medical community and the MIRACUM university hospitals.

HiGHmed - An Open Platform Approach to Enhance Care and Research across Institutional Boundaries.

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. HiGHmed brings together 24 partners from academia and industry, aiming at improvements in care provision, biomedical research and epidemiology. By establishing a shared information governance framework, data integration centers and an open platform architecture in cooperation with independent healthcare providers, the meaningful reuse of data will be facilitated. Complementary, HiGHmed integrates a total of seven Medical Informatics curricula to develop collaborative structures and processes to train medical informatics professionals, physicians and researchers in new forms of data analytics. Governance and Policies: We describe governance structures and policies that have proven effective during the conceptual phase. These were further adapted to take into account the specific needs of the development and networking phase, such as roll-out, carerelated aspects and our focus on curricula development in Medical Inform atics. Architectural Framework and Methodology: To address the challenges of organizational, technical and semantic interoperability, a concept for a scalable platform architecture, the HiGHmed Platform, was developed. We outline the basic principles and design goals of the open platform approach as well as the roles of standards and specifications such as IHE XDS, openEHR, SNOMED CT and HL7 FHIR. A shared governance framework provides the semantic artifacts which are needed to establish semantic interoperability. Use Cases: Three use cases in the fields of oncology, cardiology and infection control will demonstrate the capabilities of the HiGHmed approach. Each of the use cases entails diverse challenges in terms of data protection, privacy and security, including clinical use of genome sequencing data (oncology), continuous longitudinal monitoring of physical activity (cardiology) and cross-site analysis of patient movement data (infection control). Discussion: Besides the need for a shared governance framework and a technical infrastructure, backing from clinical leaders is a crucial factor. Moreover, firm and sustainable commitment by participating organizations to collaborate in further development of their information system architectures is needed. Other challenges including topics such as data quality, privacy regulations, and patient consent will be addressed throughout the project.

توظیف الصحف المصریة لمنصاتها الإلکترونیة فی تناولها لأزمة قطر 2017 دراسة على القائم بالاتصال فی إطار مفهوم الصحافة التکاملیة

استهدفت هذه الدراسة رصد مظاهر توظيف الصحف المصرية لمنصاتها الإلکترونية في تغطيتها لأزمة قطر 2017 وذلک من خلال التعرف على أبرز المستخدمة، والموضوعات التي تم الترکيز عليها، وأنماط تناولها عبر ،ومظاهر التکامل بين هذه مع بعضها البعض ومع النسخة الورقية، والوقوف على مقترحات القائمين لتطوير الإلکترونية للمؤسسات الصحفية العاملين بها خاصة فيما يتعلق بتناولها للأزمة مع قطر ، وذلک في إطار نظرية Mediamorphosis ومفهوم الصحافة التکاملية في إطار بات يعرف بالإعلام عبر الوسائل المتشابکة، وذلک بالتطبيق على القائمين بالمنصات الإلکترونية التابعة لعدد من المؤسسات الصحفية المصرية الحکومية والحزبية والخاصة. وقد اعتمد الباحث في هذه الدراسة على منهج المسح وأداة الاستبيان حيث تم إجراء الدراسة على عينة قوامها 214 من القائمين في الإلکترونية التابعة لعدد من الموسسات الصحفية المصرية على اختلاف توجهاتها وذلک خلال الفترة من بداية يناير حتى نهاية مارس 2018. وقد توصلت الدراسة إلى 61.2 % من القائمين عينة الدراسة يرون أن التکامل بين المنصة الإلکترونية التي يعملون بها وغيرها من التابعة لنفس المؤسسسة الصحفية هو إلى حد ما وذلک مقارنة بـ 22 % أکدوا أن هناک تکاملا إلى حد کبير بين هذه المنصات، و 16.8 % أکدوا أنه لا يوجد تکامل على الإطلاق، فيما تمثلت أبرز مظاهر التکامل في إعادة نشر المحتوى الموجود على الأخرى بنسبة 97.8 %، يليها تدشين حملات مشترکة 86 %، ثم توجيه القراء إلى مطالعة المواد المنشورة على الأخرى63.5 %، فـالترويج لما ينشر على الأخرى 57.3 %، يليه ربط الإلکترونية بعضها ببعض تقنيا 43.3 % . فيما تمثلت أبرز المعوقات التي تواجه عملية التکامل بين الإلکترونية في انعدام التنسيق بين المختلفة بنسبة 86.1 %، يليها التنافس بين هذه المنصات وذلک بنسبة 83.3 %، ثم عدم وجود إدارة مشترکة 52.8 %، يليها عدم توافر التقنيات اللازمة 61.1 %، ثم عدم توافر الميزانيات اللازمة 50 %، فـعدم کفاءة بعض العاملين في هذه المنصات 38.9 %، وأخيرا فئة أخرى 5.6 % وتمثل أبرزها في عدم وجود قناعات شخصية لدى القائمين بالاتصال في أهمية تحقيق هذا التکامل . کما أشارت الدراسة إلى وجود فروق ذات دلالة إحصائية بين القائمين من حيث اتجاههم نحو مستوى تکامل الإلکترونية في تناولها لأزمة قطر وفقا لنوع المؤسسة الصحفية التي ينتمون إليها . Abstract The Egyptian Newspapers’ Usage of Their Electronic Platforms in Handling the Crisis of Qatar 2017 A Study on the Communicators in the Framework of the Convergence Journalism Dr .Ayman Mohammed Ibrahim Borik Faculty of Communication ـ ALـ Azhar University The present study attempts to monitor the manifestations of the Egyptian newspapers’ usage of their Electronic Platforms in their coverage of Qatar crisis 2017 through identifying the most prominent platforms used; themes of focus, patterns of coverage via different platforms; the aspects of integration between these platforms, and identifying the suggestions made by the Communicators to develop Electronic Platforms of press organizations they work in, especially regarding the handling of the crisis with Qatar. All this is attempted within the framework of Mediamorphosis theory and the concept of Convergence Journalism, through what is currently known as the media across connected means. The study shall be applied to Communicators in Electronic Platforms for a number of Egyptian public and private press organizations. The present study adopts the methodology of survey and the tool of questionnaire, as the study has been applied to a sample of 214 of Communicators in Electronic Platforms of a number of “Egyptian press organizations” of different directions during the period from the beginning of January to the end of March 2018. The study found that 61.2% of the sample consider that the integration between Electronic Platforms where they work and other platforms of the same press organization is “integration” “to some extent”, compared to 22% confirmed that there is complete integration between these platforms, while 16.8% affirm that they found no integration at all. The most prominent aspects of integration are “republishing” the content of other platforms by a degree of 97.8%, then “launching joint campaigns” (86%), then “asking readers to read articles published on other platforms” (63.5%), then “promoting what is published on other platforms”, (57.3%), followed by “linking Electronic Platforms technically” (43.3%). The most prominent obstacles facing integration process between different Electronic Platforms are represented in: “the lack of coordination between different platforms” by a degree of (86.1%), followed by “competition between these platforms” (83.3%), then “the lack of joint management” (52.8%), followed by “lack of necessary techniques” (61.1%), then the “the lack of necessary budgets” (50%), then “inefficiency of some workers in these platforms” (38.9%), and finally the category of “other factors” (5.6%). The most prominent of this “other factors” are the lack of personal convictions among Communicators about the importance of achieving this integration. The study also noted statistically significant differences between the Communicators in terms of their directions towards the level of integration between Electronic Platforms in handling Qatar crisis according, based on the type of press organization they belong to.

Elizabeth Bowen’s Mélisande

Elizabeth Bowen’s novel The Last September features several allusions to the story of Pelléas and Mélisande. Traced to their original source in Maeterlinck via a once-popular song by Ethel Clifford and Alma Goetz, these allusions clarify Bowen’s links to symbolism. They also bring into focus themes of narcissism and thanatophilia that disclose the limitations of some political readings of Bowen’s novel.

THE MANY FACES OF PANENTHEISM: AN EDITORIAL INTRODUCTION

AbstractA well‐known difficulty of the interdisciplinary dialogue beyond the limits of particular disciplines is the lack of common ground regarding their metaphysical and methodological assumptions and commitments. This is particularly evident for the precarious relationship between science and religion. In a 2016 conference entitled “The Many Faces of Panentheism” held in Zurich, and now in this introduction as well as this section, we try to counteract this situation by choosing a focus theme located at the interface between nature and the divine. Thus, key perspectives, arguments, and implications of panentheism are introduced not only from one selected point of view but in relation to others. This allows us to explore territory beyond the boundaries of disciplinary backgrounds and to address intellectual and practical consequences for current debates.

Why student needs

PurposeThis paper aims to provide the rationale for the Students Needs 2025 & Beyond study. Its key purpose was to support the development of an organizational innovation function and to identify potential disruptions or surprises.Design/methodology/approachThis paper is an introduction that supports the collection of articles to follow.FindingsThe paper points out three ways in which this study took a unique view of higher education, ultimately focused around a theme of focusing on student rather than institutional needs. It recommends four ways in which the study could be used by the client organization, centered on aiding its innovation function.Research limitations/implicationsThis paper is an introduction to the research.Practical implicationsThe paper is intended for educators, researchers and administrators to gain a better understanding of the student perspective on what they will need from higher education.Originality/valueThis paper introduces the study that took the perspective of the students in looking at the future of higher education, in contrast to most studies emphasizing the perspective of the institution.

The Registry of the International Society for Heart and Lung Transplantation: Thirty-fourth Adult Heart Transplantation Report—2017; Focus Theme: Allograft ischemic time

The Registry of the International Society for Heart and Lung Transplantation: Thirty-fourth Adult Heart Transplantation Report—2017; Focus Theme: Allograft ischemic time

The Registry of the International Society for Heart and Lung Transplantation: Thirty-fourth Adult Lung And Heart-Lung Transplantation Report—2017; Focus Theme: Allograft ischemic time

The Registry of the International Society for Heart and Lung Transplantation: Thirty-fourth Adult Lung And Heart-Lung Transplantation Report—2017; Focus Theme: Allograft ischemic time

Clinical Snippets

Experimental DermatologyVolume 26, Issue 6 p. i-i CLINICAL SNIPPETSFree Access Clinical Snippets First published: 13 June 2017 https://doi.org/10.1111/exd.13385AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article. Volume26, Issue6Special Issue: Focus theme issue: Hair follicle biology and pathologyJune 2017Pages i-i RelatedInformation

Living alongside military PTSD: a qualitative study of female partners’ experiences with UK Veterans

Introduction: An increased risk of emotional burden in partners of military Veterans with mental health difficulties has been observed. This study aimed to explore the experiences and needs of female partners of Veterans seeking help. Methods: Our sample of eight female partners was drawn from a population of help-seeking Veterans who had received treatment for PTSD. Qualitative data were collected using a semi-structured interview schedule. Results: Super-ordinate themes of challenges faced, desired type of support, and barriers to support were each described by a set of sub-themes. Challenges faced were described with the themes of inequality in relationship, loss of congruence with own identity, volatile environment, and emotional distress and isolation. Desired type of support was described by the themes of practical focus on improving, sharing with fellow experts, and support tailored to the partner. Barriers to support were described by the themes feeling restricted by practical barriers and ambivalence about the involvement of others. Discussion: Interventions to support partners of Veterans with mental health difficulties need to address their individual needs, focus on practical techniques, and consider practical limitations.

Chronic Disease Registries - Trends and Challenges.

This accompanying editorial isan introduction to the focus theme of "chronic disease registries - trends and challenges". A call for papers was announced on the website of Methods of Information inMedicine in April 2016 with submission deadline in September 2016. A peer review process was established to select the papers for the focus theme, managed by two guest editors. Three papers were selected to be included in the focus theme. Topics range from contributions to patient care through implementation of clinical decision support functionality in clinical registries; analysing similar-purposed acute coronary syndrome registries of two countries and their registry-to-SNOMED CT maps; and data extraction for speciality population registries from electronic health record data rather than manual abstraction. The focus theme gives insight into new developments related to disease registration. This applies to technical challenges such as data linkage and data as well as data structure abstraction, but also the utilisation for clinical decision making.

Technologies Solutions Schemes for Patients' Rehabilitation. Methodologies, Models and Algorithms.

The present editorial is part of thefocus theme of Methods of Information in Medicine entitled "Technologies solutions schemes for Patients' Rehabilitation: Methodologies, Models and Algorithms". The focus theme aims to present nowadays most innovative solutions to improve patients' rehabilitation by applying and using sophisticated and pioneering Information and Communication Technologies (ICT) and human factors. The focus theme explores the different existent research works and tools used, applied and developed for incapable people in terms of rehabilitation and health care, as to look into the extent methodologies, models and algorithms by means of ICT in this process. The focus theme lists a group of research works, which are presenting various solutions using ICT systems to improve the rehabilitation process of people with physical incapacities and to help them in carrying out their daily life.

Impact of using an online standardised data collection system in private physiotherapy practices in the UK: practitioners’ views

Relevance: Clinicians are becoming increasingly aware of the need to be able to demonstrate and account for the delivery and quality of their clinical services. Online standardised data collection systems, if carried out rigorously, can be used by clinicians to gather this information in a robust and accessible way. The standardised data collection system used in this project was developed following a number of different phases including identifying relevant criteria for inclusion, piloting the tool through a number of pilot studies and the development of an electronic database. Purpose: Since November 2014 Physio First (the Organisation for Chartered Physiotherapists in Private Practice in the UK) has offered all its members the opportunity to participate in an online standardised data collection study. This has provided detailed information about current practice, patient demographics and outcome of care within physiotherapy private practices in the UK. Practitioners who contributed to the study were asked for feedback on their experience of participation. Methods/Analysis: 237 practitioners were recruited to the study. Practitioners who input data onto the online system were contacted via email and asked to provide feedback on their experience and any impact of participation. This was an online survey questionnaire design. The survey (via Survey Monkey) comprised of 5 open ended questions to enable qualitatively driven analysis. Data were managed and analysed thematically. Results: The survey response rate was 25%. Four themes emerged from the data relating to: the individual practitioner, the business, the patient focus and the practicalities of data collection. The theme centred around the individual practitioner was multifaceted and included personal and practice development (i.e. stimulating reflective practice, awareness of the importance of data and improvements in day to day practice), professional development (i.e. identifying CPD needs and facilitating treatment evaluation) and supporting the profession (i.e. commitment to contributing to the knowledge base). The business theme comprised two categories, new knowledge (i.e. increased awareness of patient profiles and the importance of benchmarking), and use of data in informing practice (i.e. for business management, marketing, education and practitioner development). The patient focus theme related to the patient's perceptions and included quality assurance and time scale issues. The key issue for the practicalities of data collection was the increased workload (i.e. time limitations, duration and software compatibility). Discussion and conclusions: Practitioners feedback varied following use of the online standardised data collection system. Some were entirely positive in terms of the impact it had had on their development (personal, practice and professional) and their business, whilst others had more mixed feelings. The negative impact reported was the increased workload, specifically the extra time commitment the data collection entailed. Impact and Implications: Physio First and their participating practitioners have a growing database of patient data. This has been achieved using an online database designed to collect standardised data. Whilst there is an issue concerning the time required to collect this data, the benefit of being able to show how efficient, timely and equitable their services are will provide valuable support to them in the ever changing healthcare market.