Informal Nature Research Articles

Patients, payers and developers of Orphan Medicinal Products: lessons learned from 10 years’ multi-stakeholder dialogue on improving access in Europe via MoCA

BackgroundThe Mechanism of Coordinated Access to Orphan Medicinal Products (MoCA) was established in 2013 with the intention of developing a coordinated mechanism between volunteering EU stakeholders and developers of Orphan Medicinal Products (OMPs) to support the exchange of information aimed at enabling informed decisions on pricing and reimbursement at Member State level and to evaluate the value of an OMP based on a Transparent Value Framework. The objective of the collaborative approach was to support more equitable access to authorised therapies for people living with rare diseases, rational prices for payers and more predictable market conditions for OMP developers. Over the past 10 years, the MoCA has conducted a series of pilot projects, examining a variety of different products and technologies at different stages of development; and with contributions from a variety of patient representatives, participation from EU payers from a range of Member States and, recently, with EUnetHTA members and the European Medicines Agency participating in the meetings as observers.Results10 years on from the establishment of the MoCA, the European landscape has significantly evolved, not only in the field of drug development with increasingly transformative therapies based on novel technologies, but also in terms of larger numbers of approved treatments, increased budget impact and the resulting associated uncertainties; as well as in terms of stakeholder collaboration and interactions. The value of early dialogue with OMP developers, including the EU payer community via their national decision-making authorities, is a key element within this early interaction and contributes to identifying, managing and reducing uncertainties allowing a prospectively planned approach earlier in development and, consequently, to support more timely, sustainable and equitable access to new OMPs, particularly where there is a high unmet medical need.ConclusionsThe voluntary, informal nature of the MoCA interactions creates a flexible framework for non-binding dialogue. A forum for such interactions is needed to achieve the aims of the MoCA and both to support healthcare systems in planning as well as to underpin timely, equitable and sustainable access to new therapies for patients with rare diseases within the EU.

Health effects of informal precarious workers in occupational environments with high exposure to pollutants.

The aim is to investigate and describe the health conditions of workers who are employed in precarious work settings in Mexico. Specifically, the study aims to provide insight on the health status of workers who are vulnerable due to the informal nature of their employment. Through the evaluation of three different scenarios of precarious employment (n = 110), including workers in mercury miner (workers A), brick-kilns (workers B), and quarries workers (workers C). The study analyzes clinical parameters to determine the workers' renal health condition and assesses their pulmonary function using spirometry. Multivariate analyses and Spearman correlation are performed to determine the contribution of length of service to workers' health parameters. Workers B have the highest incidence of clinical health alterations, with the highest BMI and prediabetes/diabetes index, albumin creatinine ratio, and eGFR. Moreover, pulmonary function parameters show a decrease in %FEV1/FVC in workers B and C compared to workers A, while workers A demonstrate a more significant decrease in %FEV1. Additionally, a negative correlation is observed between the length of service in precarious work settings and lung parameters (r = -0.538, p < 0.001). In conclusion, this study highlights the need to address the issue of precarious employment in Mexico by improving working conditions, access to healthcare and promoting social protection for workers, which can reduce the number of work-related illnesses and deaths and ensure the safety and health of workers.

Innovative Approaches for Tackling Tax Evasion in the South African Minibus Taxi Industry: Lessons from Ghana, Zambia, and Zimbabwe

In South Africa, minibus taxis are a crucial mode of public transport for many commuters and a vital informal business sector with an estimated value of R90 billion. Concerns have been raised that the South African Revenue Service (SARS) is not collecting the optimal amount of tax revenue from this industry, with estimated tax collection at only R5 million in 2021. As a result of concerns that this industry might be involved in tax evasion or massive tax avoidance, this study investigates the taxation of minibus taxis in South Africa and explores alternative tax regimes that could be implemented to improve revenue collection. The study compares the current South African turnover tax system for minibus taxi operators to other African tax systems and evaluates a viable alternative tax regime or tax collection system. To improve tax collection from the industry, South Africa could consider a tax system tailored to the industry’s informal nature, utilising metrics such as vehicle seating capacity or distance travelled. A standardised tax system for small, medium, and micro enterprises may not be suitable. Consultation with industry stakeholders is essential for the proposed tax system to be acceptable. The study’s findings could inform South Africa’s National Treasury in creating a tax structure or collection scheme targeting the minibus taxi industry. This could increase tax revenue collection from the industry and support government expenditure, including income and wealth redistribution. This study distinguishes itself from prior publications on the South African minibus taxi industry by addressing tax compliance and collection challenges. It offers recommendations for alternative tax regimes to mitigate these challenges.

Preventing and protesting workplace sexual harassment: Women agro‐processing workers in Bangladesh

SummaryMotivationSexual harassment of women in the workplace is considered to be one of the reasons holding back women from entering work and a major reason for women dropping out of work in Bangladesh. However, paid work is an important pathway to empowerment. To enable and sustain women's entry into the formal sectors of the economy, it is important to understand their voice and agency in preventing workplace sexual harassment and from the obstacles they face in doing so.PurposeThe article explores how language and social and gender norms constrain young women's voice and agency in response to sexual harassment. Our research asked how language, gender norms, and informality in work arrangements influence young women's voice and agency in response to sexual harassment at work.Methods and approachBased on case studies with factory workers in agro‐processing firms in the outskirts of the capital, Dhaka, 21 in‐depth interviews were carried out, supplemented by participatory techniques of gender safety audits and body mapping.FindingsI show the informal nature of formal workspaces and the failure of formal institutions which create precarity for the women working there. Young women's experiences, perceptions, and articulation of sexual harassment and attempts at prevention or redress are determined by gender norms and how these norms influence the factory workspace and interactions with others in that space. I argue that sexual harassment is normalized, formal complaints mechanisms do not work, and so informal means aligned with social norms may be the only option available.Policy implicationsThe policy implications of the research include the need to recognize the informal mechanisms being used and the importance of developing a common language that will allow the “victims” to speak openly about their experiences and make complaints, increasing access to and confidence in formal complaints mechanisms and developing young women's civic and political capacities to protest harassment and seek redress.

Resisting Venice: individual and collective housing practices to stay put in the tourist city

ABSTRACT Whereas Venice (Italy) has been extensively analysed through the lens of tourism, little has been written so far regarding the resistance practices emerging due to increasing tourism-led gentrification. This paper presents two examples of housing initiatives taking place in the historic city and its neighbouring lagoon islands. The first, promoted by a collective actor (Assemblea Sociale per la Casa), concerns the selection, occupation, and self-restoration of public dwellings located in the historic city; the second, an individual choice made by some citizens, concerns moving to the small lagoon islands as not simply a form of displacement, but as a resistance mechanism against the progressive expansion of the tourism industry into the lagoon margins. Drawing on Annunziata and Rivas-Alonso’s work, the aim of this contribution is to provide an interpretation of such initiatives as examples of resistance practices in gentrifying contexts, and to enrich the literature on resisting gentrification by stressing their informal, invisible, and ambiguous nature.

Workplace sexual harassment as a feature of precarious work in Uganda's agro‐processing factories: “Mince your words and watch yourself”

SummaryMotivationThe agro‐processing sector in Uganda provides jobs to large numbers of workers. While paid work is supposed to be empowering for women, the factory jobs are informal and unsafe, and workplace sexual harassment undermines women's empowerment. To enable decent jobs for women, it is important to understand what constrains their voice and agency in responding to workplace sexual harassment.PurposeThe article aims to show how workplace sexual harassment is a key feature of precarious work for women working in low‐skilled, informal jobs in factories. The study asked how gender norms and informality in labour arrangements that are part of global capitalist labour relations influence young women's voice and agency in response to sexual harassment at work.Methods and approachTwenty in‐depth interviews were carried out with factory workers in seven different agro‐processing factories in Uganda's capital Kampala, supplemented with participatory methods like Safety Audits and Body Mappings.FindingsWe show the informal nature of jobs in factories and how precarious working conditions create the risks of experiencing sexual harassment by managers and supervisors. Keeping jobs informal enables factories to eschew workplace policies. Young women's experiences and articulation of sexual harassment are constrained by social and gender norms; and norms influence factory‐based mechanisms, where they exist. Women rely on informal tactics to prevent sexual harassment.Policy implicationsThe policy implications of the research include the importance of improving the implementation of formal complaints mechanisms; and especially developing young women's political capacities to protest collectively against harassment and seek redress, and addressing social and gender norms.

Improving Named Entity Recognition for Social Media with Data Augmentation

Social media is important for providing text information; however, due to its informal and unstructured nature, traditional named entity recognition (NER) methods face the challenge of achieving high accuracy when dealing with social media data. This paper proposes a new method for social media named entity recognition with data augmentation. First, we pre-train the language model by using a bi-directional encoder representation of the transformer (BERT) to obtain a semantic vector of the word based on the contextual information of the word. Then, we obtain similar entities via data augmentation methods and perform substitution or semantic transformation on these entities. After that, the input into the Bi-LSTM model is trained and then fused and fine-tuned to obtain the best label. In addition, our use of the self-attentive layer captures the essential information of the features and reduces the reliance on external information. Experimental results on the WNUT16, WNUT17, and OntoNotes 5.0 datasets confirm the effectiveness of our proposed model.

Friends, peers and safeguarding

Friends, peers and safeguarding

Coronavirus disease 2019 (COVID-19) outbreak on an in-patient medical unit associated with unrecognized exposures in common areas-Epidemiological and whole-genome sequencing investigation.

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) hospital outbreaks have been common and devastating during the coronavirus disease 2019 (COVID-19) pandemic. Understanding SARS-CoV-2 transmission in these environments is critical for preventing and managing outbreaks. Outbreak investigation through epidemiological mapping and whole-genome sequencing phylogeny. Hospital in-patient medical unit outbreak in Toronto, Canada, from November 2020 to January 2021. The outbreak involved 8 patients and 10 staff and was associated with 3 patient deaths. Patients being cared for in geriatric chairs at the nursing station were at high risk for both acquiring and transmitting SARS-CoV-2 to other patients and staff. Furthermore, given the informal nature of these transmissions, they were not initially recognized, which led to further transmission and missing the opportunity for preventative COVID-19 therapies. During outbreak prevention and management, the risk of informal patient care settings, such as geriatric chairs, should be considered. During high-risk periods or during outbreaks, efforts should be made to care for patients in their rooms when possible.

Pecularities of evaluating methodology of learning and education of adults

Adult learning and education can be seen as the fourth pillar of lifelong learning – alongside school education, professional training and higher education. Adult learning and education falls under the general forms of education: formal, non-formal and informal, being predominantly of a non-formal and informal nature. This system allows any adult to develop personal and professional skills, thus becoming an active member of society. The methodological framework for adult learning and education in this system is a main component, but the establishment of a mechanism for evaluating its theoretical and procedural approaches is an indisputable condition for ensuring the quality of learning and formal and non-formal education of adults. The proposed concept is based on two dimensions: the evaluation of methodology of learning and education of adults as a science and part of andragogy and the evaluation of methodology of learning and education of adults as a set of strategies and didactic methods aimed at the formation in adults of certain competences, determined by their needs. A mechanism for evaluating the respective methodology in both dimensions is also proposed.

Investigating the prospect of cleaner production in informal enterprises: A scientific assessment of environmental burdens and economic efficiency

The present study aims to assess the prospects for cleaner production (CP) and sustainable development (SD) of informally operated small manufacturing enterprises, which are frequently blamed for uncontrolled waste disposal and causing pollution to the environment. The economic efficiency level of these firms has been explored to this end, and the metallic pollution loads in the surrounding environment have been scientifically analyzed to investigate the nexus between these two. DEA (Data Envelopment Analysis)-Tobit analysis has been employed, and a pollution load index (PLI) of heavy metal pollution comprising two environmental compartments (soil and water) has been constructed based on the concentration level of metalloid pollutants in the samples collected from the surrounding areas of the studied informal firms in Bangladesh. The study disproves CP practice in majority of the informal firms in Bangladesh by observing a positive relationship between firm-level efficiency and pollution load sourced from their production activities. Afterwards, this study estimates the eco-efficiency level of firms by considering pollution load as an undesirable output and minimizing its impact in an input-oriented DEA model. Applying the eco-efficiency scores in censored Tobit regression analysis, the outcome endorses the prospect of CP for informally operated enterprises in Bangladesh. However, the CP prospect can only materialize if and only if firms are provided with adequate technical, financial, and strategic support for achieving eco-efficiency in their production. The informal and marginal nature of the studied firms restricts them from getting access to the facilities and support services needed for implementing CP and moving towards sustainable manufacturing. Therefore, this study recommends green practices in informal manufacturing and limiting the informal firms by bringing them gradually under the coverage of formalization, which is in line with the achievement of the targets mentioned in Sustainable Development Goal 8.

The Legislative Drafting in Sweden: Its Informal and Non-Linear Nature

The Legislative Drafting in Sweden: Its Informal and Non-Linear Nature

Variation, birth, and death of some slang expressions in the Onitsha environment

The current research work hinges on the variation, birth, and death of some slang expressions in the Onitsha environment. Slang expression is a language style that has various definitions, but one common thing about these definitions is that slang is an informal expression used during an informal communication. Due to its informal nature, variation, birth, and death do occur and that is the crux of this study. Over the years, some researchers have carried out research on slang expressions and some of them rooted their research on the Igbo slang. This spurred the quest to look at the variation, birth, and death of some slang expressions in the Onitsha environment. Data for this work were sourced from the students and the residents of Onitsha. The research portrayed that there are variations in some slang expressions that express female body structure endowment, beauty/handsomeness, sex drive, short of words deeds, and smoking–the birth of new slang expressions, which is the cause of slang variation and the death of slang expressions. The research has it that some of these slang expressions originate from some of the Igbo contemporary songs. Finally, Holmes’ (1) idea that slang expressions are specifically for the young people is not applicable in the Onitsha environment because slang expressions are used by both young and old. In fact, it is gradually becoming a way of communication among people.

تداخل مسميات اساليب الترجمة واثرها في اللغة العربية ودراسات الترجمة

Some translation methods overlap to the extent that they are an unnecessary proliferation of terms. The aim of this study therefore is twofold: Firstly, it examines four methods of translation (literal translation, overt translation, semantic translation, and direct translation). The study finds that these methods overlap to different degrees. While semantic and overt methods of translation apply similar features, literal translation has subtle differences from semantic and overt methods of translation. Direct Translation has more distinctive features than the other three methods. Secondly, the study examines the names for these methods in the Arabic language and shows how the Arabic terms overlap to a large extent, which is confusing to Arab practitioners. The study therefore suggests other names for the methods to minimize their overlap and increase their practicality. تفترض هذه الدراسة التداخل الكبير لبعض اساليب الترجمة، لدرجة انهم يشكلون توزيع غير ضروري لمسميات هذه االساليب. ينقسم هدف هذه الدراسة الى شقين. االول: دراسة اربع انواع من اساليب الترجمة(الترجمة الحرفية، الترجمة الظاهرة، الترجمة الداللية، الترجمةالمباشرة.) وجدت الدراسة ان هذه االساليب تتداخل بدرجات متفاوتة. حيث تنطبق على الترجمة الداللية والظاهرة الكثير من الصفات المتشابهة. في حين هناك اختالفات حاذقة بين الترجمة الحرفية والترجمة الداللية والواضحة.بينما للترجمة المباشرة سمات مميزة تختلف عن اساليبالترجمة الثالثة االخرى.ركز الشق الثاتي من الدراسة على اسماء هذه االساليب باللغة العربية. حيث ان المسميات العربية لهذه االساليب تتداخل بشكل كبير، وتشكل مصدرا لالرباك للعديد من ممارسين المهنة. لذلك قامت هذه الدراسة باقتراح اسماء اخرى لهذه االساليب للحد من نسبة تداخلها وزيادة عمليتها

Dragonfly Optimization with Deep Learning Enabled Sentiment Analysis for Arabic Tweets

Sentiment Analysis (SA) is one of the Machine Learning (ML) techniques that has been investigated by several researchers in recent years, especially due to the evolution of novel data collection methods focused on social media. In literature, it has been reported that SA data is created for English language in excess of any other language. It is challenging to perform SA for Arabic Twitter data owing to informal nature and rich morphology of Arabic language. An earlier study conducted upon SA for Arabic Twitter focused mostly on automatic extraction of the features from the text. Neural word embedding has been employed in literature, since it is less labor-intensive than automatic feature engineering. By ignoring the context of sentiment, most of the word-embedding models follow syntactic data of words. The current study presents a new Dragonfly Optimization with Deep Learning Enabled Sentiment Analysis for Arabic Tweets (DFODL-SAAT) model. The aim of the presented DFODL-SAAT model is to distinguish the sentiments from opinions that are tweeted in Arabic language. At first, data cleaning and pre-processing steps are performed to convert the input tweets into a useful format. In addition, TF-IDF model is exploited as a feature extractor to generate the feature vectors. Besides, Attention-based Bidirectional Long Short Term Memory (ABLSTM) technique is applied for identification and classification of sentiments. At last, the hyperparameters of ABLSTM model are optimized using DFO algorithm. The performance of the proposed DFODL-SAAT model was validated using the benchmark dataset and the outcomes were investigated under different aspects. The experimental outcomes highlight the superiority of DFODL-SAAT model over recent approaches.

Ценность места: как воспроизводится символическая собственность в стихийной рекреации (кейс Караканского бора)

Spontaneous tourism practices remain a blank spot in modern recreation research. At the same time,&nbsp; uburban forests are a point of attraction and a recreational magnet for residents of large cities. This work is directed at studying the formation of the value of place in its be avioral aspect as the basis for the emergence of a sense of place among the inhabitants of tourist camps. The mechanism for transforming a unified forest landscape into a unique (valuable) place is described through the construction and reproduction of practices for using tourist camps and property rights to them. The information base was compiled from materials from an ethnographic case study conducted during the summer field seasons of 2021 and 2022 in the Karakansky pine wood in the Novosibirsk region. During the expedition, 30 km of the coastline of the Ob Reservoir were selectively investigated, and a continuous survey was carried out on 12 km of the entire coastline. Tourist communities were identified, the “coastal experience” of which is 30-40 years, including, among other things, the third generation of vacationers. A typology of tourists is proposed based on the degree of their rootedness, or “growing” into the landscape, i.e. the duration and regularity of their stay, as well as the degree of transformation of the landscape. The practices of choosing and developing a place are considered, which determine how a place becomes “one’s own,” how it is held, and then passed on to the next users. Despite the informal nature of property relations and the need for their constant confirmation, the main components of property rights (the right to change the form and substance and the right to transfer the asset to other people) are exercised by the vast majority of users. Despite the variability of place practices, environmental practices are an undeniable basis for the appropriation of a tourist camp. The absence of garbage is a visible and socially supported indicator of the implementation of place improvement practices, i.e. investment in a place and its recreational potential.&nbsp; &nbsp

CONTINUITY OF VOCATIONAL EDUCATION AS AN INNOVATIVE CHALLENGE IN THE CONDITIONS OF EUROPEAN INTEGRATION AND DIGITALIZATION

The article is devoted to the issue of continuity of vocational education in the conditions of European integration and digitalization. The purpose of research is analysis of strategic documents and accumulated better practices of the EU countries for identifying the main directions of development of the continuous education in Ukraine in the conditions of European integration and digitalization. Based on the analysis of the strategic documents of the European Union, it has been found that high-quality educational content (in terms of content and form of execution) with the possibility of interactive participation and mentoring is in demand today. Distance education has significant advantages for the implementation of continuous education that is oriented to an unlimited number of students with the possibility of obtaining knowledge at a convenient time, the possibility of choosing a convenient (optimal) learning pace. That variant of obtaining education is available for people of different training levels, age, social position and health. It has been summed up that the distance format is largely consistent with the principles of the concept of continuous education, and meet the dynamically changing needs of a modern person in applied knowledge. The general specific of the examined formats is strengthening the components of the informal nature of education, individualization (customization) of educational practices and orientation to the subjective needs of the personality. It has been determined that the key direction of development of the educational environment in the conditions of European integration and digitalization are distance education; gamification of education and using cloud technologies; implementation of augmented reality solutions and visualization technologies; development of social networks in education; development of mass opened online courses. It has been generalized that the following measures will facilitate the continuity of vocational education in the conditions of European integration and digitalization: educational trips, exchange of delegations; education in the format of "summer" and "winter" schools with "deep immersion", organization and conduction of author’s master classes, use of project technologies and techniques of game technology; increasing the share of distance learning to 50% of the total number of courses, using interactive forms (webinars, quizzes, virtual traineeships, etc.) with the involvement of representatives of educational organizations of the European Union.

Water-Sensitive Urban Plan for Lima Metropolitan Area (Peru) Based on Changes in the Urban Landscape from 1990 to 2021

Lima is the second-largest capital of the world located in a desert and already faces water scarcity. Here, more than 30% of the population is supplied by only 2.2% of the national water resources. The urbanization process has an informal nature and occurs at a very accelerated rate. These new settlements lack water infrastructure and access to other services. The objectives of this study are to quantify changes in the urban landscape of Lima Metropolitan Area from 1990 to 2021 to propose a water-sensitive urban plan by detecting changes, urbanization trends and identifying alternative water sources. The trend suggests a future constant increment of the urban areas, diversification of the landscape and more equally distributed land cover. Lima has more disconnected settlements and more complex shapes of urban patches nowadays. The landscape is also more mingled, but cracked. Overall, the trend is to become more disaggregated, demanding small and scattered water solutions. The WSUP includes the implementation of treatment plants in new multi-family buildings, hybrid desalination plants at the coast and parks with fog collectors on the hills. Additionally, these solutions will require the beneficiary community and the local authorities to work together in the planning and maintenance.

Pentahelix's Strategy in Reducing the Risk of a COVID-19 Pandemic Disaster at Semaki Village, Umbulharjo Yogyakarta

Pentahelix concept is an innovation in the field of disaster management which includes the government, academia, media, private sector and community. The pentahelix parties is needed stop the transmission of COVID-19. The Umbulharjo Kemantren contributed 45.45% of the number of confirmed COVID-19 patients in the City of Yogyakarta. Semaki has the lowest number of confirmed cases of COVID-19 compared to other Kelurahans in the Umbulharjo. This study aims to describe the role of the parties in reducing the impact, strategies of the parties in reducing the COVID-19 pandemic disaster in Semaki. This research is a field research to explain the COVID-19 disaster and the patterns used to deal with it. The data obtained from observations, document studies, questionnaires and interviews. Observations were made to observe objects and research subjects directly in the field, the results of the observations were recorded and used as material for interviews. Document studies are carried out by examining documents from the sub-district, incident records, and documents. The questionnaire was conducted by involving 100 respondents from the Semaki. Interviews were conducted with both formal and informal nature. The government make regulations and mobilize every element within the government according to the field of work, academics play a role in education and training on the use of online meetings, media does coverage, private sector contributes in food assistance and isolation places, and the community carried out spraying activities, provided assistance to isoman residents, collected data and carried out area monitoring.

‘Capturing the magic': grassroots perspectives on evaluating open youth work

ABSTRACT Youth work’s informal and youth-centred nature raises challenges for evaluation, challenges that are intensified by the growing dominance of measurement, market values and surveillance in the context of the neoliberal restructuring of youth services. This article builds on Griffiths’ (2012, Why Joy in Education Is an Issue for Socially Just Policies. Journal of Education Policy 27 (5): 655–670) philosophical argument for valuing the intrinsic contribution of education, thus conceptualising evaluation as encompassing more than measuring outcomes. It reports the findings of a three-year qualitative study in eight open youth work settings in England that investigated the perspectives of 143 young people, youth workers and policy makers on evaluation in youth work. While young people and youth workers had often participated in evaluations they found meaningful, some approaches to impact measurement were experienced as too formal, intrusive, insensitive and burdensome. The article argues that evaluation and accountability processes must be practice-informed, youth-centred, and anti-oppressive. It recommends the participatory and collaborative development of diverse methods and approaches to evaluation that ‘capture the magic’ of youth work while enabling further reflection and development of practice.