scholarly journals In search of ‘extra data’: Making tissues flow from personal to personalised medicine

2021 ◽  
Vol 8 (2) ◽  
pp. 205395172110356
Author(s):  
Clémence Pinel ◽  
Mette N Svendsen
Keyword(s):  
Data Linkage ◽  
Personalised Medicine ◽  
Research Data ◽  
Archival Science ◽  
Original Source ◽  
Critical Data ◽  
Ethnographic Fieldwork ◽  
Personal Medicine ◽  
Key Features ◽  
Pathology Samples

One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories.

Hostile hospitality and the criminalization of civil society actors aiding border crossers in Greece

2020 ◽  
pp. 026377582095870
Author(s):  
Laura Schack ◽  
Ashley Witcher
Keyword(s):  
Civil Society ◽  
Field Research ◽  
State Policies ◽  
Research Data ◽  
Search And Rescue ◽  
Constitutive Relationship ◽  
The Core ◽  
Police Harassment ◽  
Key Features ◽  
Border Crossers

Civil society actors aiding border crossers in Europe have been subject to systematic criminalization through prosecutions and attempted prosecutions, extensive police harassment, public scapegoating, and the imposition of bureaucratic barriers. We seek to explain why this is occurring through the analysis of field research data, collected in Greece between 2017 and 2019, through the lens of Derrida’s concept of “hostile hospitality”. We develop a theoretical framework with three key features: first, the demarcation between insider and outsider which lies at the core of notions of hospitality; second, the constitutive relationship between hostility and hospitality which is closely related to notions of sovereignty; and third, the primacy of state definitions of hospitality, which subordinate private and collective hospitality practices. This explanatory framework guides the analysis of two case studies from our fieldwork: the criminalization of solidarity initiatives providing accommodation in squats in Athens and Pikpa camp on Lesvos, and the criminalization of boat-spotting and search and rescue activities on Lesvos. We conclude that civil society actors aiding border crossers in Greece are criminalized because they challenge and interfere with state policies and practices of hostile hospitality.

Modern Child in Modern Educational Environment

2015 ◽  
Vol 3 (2) ◽  
pp. 9-16
Author(s):  
Бородкина ◽  
N. Borodkina ◽  
Тихомирова ◽  
O. Tikhomirova
Keyword(s):  
Social Development ◽  
Educational Environment ◽  
Research Data ◽  
Modern School ◽  
The World ◽  
Key Features ◽  
World School

A subject related to readiness of the modern school in general and teachers in particular to respond adequately to modern junior schoolchildren requests is offered for discussion in this paper. Conclusions based on research data are drawn about a gap between expectations of children coming to school, and teachers’ ability to respond to their requests. Key features related to personal and social development of today´s junior schoolchild, their influence on pupils’ attitude to school and family are marked out. Different views on understanding by the modern junior schoolchildren their place in the world, school and family are considered. Reasons of decrease in junior schoolchildren’ educational motivations are revealed, and possible ways for overcoming of connected with it difficulties are outlined.

scholarly journals Research materials from qualitative fieldwork in Japan, 2013 – Vol. 2

2020 ◽  
pp. 87-103
Author(s):  
Marco Pellitteri
Keyword(s):  
Critical Review ◽  
Qualitative Data ◽  
Past Research ◽  
Research Paper ◽  
Research Data ◽  
Original Research ◽  
Research Activity ◽  
Research Project ◽  
Original Source ◽  
The Future

Among the possible innovative ways to publish research data and materials—alongside the more established formats of the research paper, the academic article, and the critical review—we inaugurate here the format of the “Research Files”, batches of qualitative data which have been assessed as useful materials for other scholars. A certain amount of data which academics collect often remains underused. But such data, if contextualised within one’s own past research activity, can be kept “alive” and perhaps be reborn and virtuously transmitted to other researchers who may want to make some use of them, citing the original source and therefore generating a proficuous circle of knowledge. We decided to distribute a few of these materials over different issues of Mutual Images, grouping them by type. In this first instalment (presenting some early interviews from one of my own past projects), we are also suggesting a way to interpret the notion of “research files” for other scholars who in the future may want to experiment with it. The format of presentation we have thought of as appropriate—or, at least, admissible and functional—is that of recounting the general features of the original research project within which the data here published were produced, so to favour the circulation of ideas.

scholarly journals Understanding the hydrologyand weather knowledge of the fishermen in the Southwest coastal area: A case study of An Thuy commune (Ba Tri district, Ben Tre province) and Song Doc town (Tran Van Thoi district, Ca Mau province)

2020 ◽  
Vol 4 (4) ◽  
pp. 622-629
Author(s):  
Duong Hoang Loc
Keyword(s):  
Coastal Area ◽  
Research Data ◽  
Fish Processing ◽  
Research Results ◽  
Hydrological Characteristics ◽  
Ethnographic Fieldwork ◽  
Indigenous Knowledge System ◽  
Field Notes ◽  
Depth Interviews

This paper aims to provide an indigenous knowledge system on the weather and hydrology system of the fishermen in the Southwest coastal area which is based on the research data in two specific communities: An Thuy commune (Ba Tri district, Ben Tre province) and Song Doc town (Tran Van Thoi district, Ca Mau province). The research results show that this knowledge is rich, diverse, and has been accumulated by the community for generations, especially to enable them to forecast the weather to preserve assets and lives during fish processing activities. The knowledge of the community related to weather and hydrology includes the insight of monsoon, water and storms. Offshore fishermen mastering each of this knowledge items can predict the weather to avoid the risks of sudden storms by choosing an optimal or preventive plan. This study is based on the data collected from qualitative research methods, including ethnographic fieldwork, in-depth interviews with experienced fishermen together with field notes in two areas of An Thuy commune, and Song Doc town. Besides, the paper recommends a proper proposal to preserve this knowledge in current conditions. The research results of this paper have shown the differences in local knowledge of those communities due to the weather and hydrological characteristics of the two Southeast and Southwest regions of the East Sea.

scholarly journals Google Scholar Metrics, Pengaruhnya pada Jurnal Ilmiah

2020 ◽  
Vol 8 (1) ◽  
pp. 91
Author(s):  
Karmila Pare Allo ◽  
La Ode Ismail
Keyword(s):  
Research Data ◽  
Google Scholar ◽  
Archival Science

Google scholar merupakan mesin pencari yang membantu akademisi untuk menelusuri karya tulis ilmiah, seperti artikel jurnal yang telah diterbitkan di mana saja. Selain itu, media ini juga dapat digunakan oleh akademisi atau jurnal ilmiah untuk mengukur metrik perkembangan sitasinya dengan membuat profil pada Google Scholar Profile. Penelitian ini akan menggambarkan; 1) metrik sitasi Khizanah al-Hikmah : Jurnal Ilmu Perpustakaan, Informasi, dan Kearsipan (KAH-JIPIK), 2) jenis dokumen yang paling banyak menyitir, 3) artikel yang paling sering disitir, dan 4) manfaat yang dirasakan oleh KAH-JIPIK pada Google Scholar Metrics (GSM). Data penelitian diperoleh dari hasil wawancara dengan jurnal manajer dan GSM dari KAH-JIPIK. Ms. Excel digunakan untuk mengalkulasi dan memberikan grafik sitasi. Hasil penelitian ini menunjukkan bahwa terjadi penurunan sitiran yang diperoleh dari tahun ke tahun, jenis dokumen yang menyitir artikel Khizanah Al-Hikmah adalah jurnal, skripsi, tesis, prosiding, makalah, buku dan sumber lainnya, artikel yang paling banyak disitir adalah yang ditulis oleh Machsun Rifauddin dengan jumlah sitiran sebanyak 30. Penelitian dapat berimplikasi pada strategi untuk memaksimalkan lagi agar para pembaca tertarik untuk menyitir jurnal ini. Jurnal ini juga perlu memaksimalkan kualitas artikel yang diterimanya, khususnya yang berkaitan dengan perkembangan bidang yang berkaitan.ABSTRACTGoogle Scholar helps academicians to explore scholarly papers, such as academic articles that have been published everywhere. In addition, this tool can also be used by authors or journals to measure their citations trend by creating their own Google Scholar Profile. This research will describe; 1) Google Scholars Metrics of Khizanah al-Hikmah: Journal of Library, Information, and Archival Science (KAH-JIPIK), 2) the types of documents that have cited the most, 3) the most cited articles, and 4) the benefit of Google Scholar Metrics. The research data were obtained from interviews with its journal manager and KAH-JIPIK’s Google Scholar profile. Ms. Excel was used to help to calculate and provide citation charts. The results of this study indicate that there was a decreasing trend in citations from year to year, the types of documents citing Khizanah Al-Hikmah articles were journals, theses, proceedings, papers, books, and other sources, and the most cited article was written by Machsun Rifauddin with a total of 30 citations. This study might have strong recommendations for the journal to maximize the promotion so the readers are interested in citing the published articles. The journal also needs to maximize the quality of submitted articles, particularly related to the development of the fields.

scholarly journals Research materials from fieldwork in Japan, 2013

2019 ◽  
pp. 29-50
Author(s):  
Marco Pellitteri
Keyword(s):  
Critical Review ◽  
Qualitative Data ◽  
Past Research ◽  
Research Paper ◽  
Research Data ◽  
Original Research ◽  
Research Activity ◽  
Research Project ◽  
Original Source ◽  
The Future

Among the possible innovative ways to publish research data and materials—alongside the more established formats of the research paper, the academic article, and the critical review—we inaugurate here the format of the “Research Files”, batches of qualitative data which have been assessed as useful materials for other scholars. A certain amount of data which academics collect often remains underused. But such data, if contextualised within one’s own past research activity, can be kept “alive” and perhaps be reborn and virtuously transmitted to other researchers who may want to make some use of them, citing the original source and therefore generating a proficuous circle of knowledge. We decided to distribute a few of these materials over different issues of Mutual Images, grouping them by type. In this first instalment (presenting some early interviews from one of my own past projects), we are also suggesting a way to interpret the notion of “research files” for other scholars who in the future may want to experiment with it. The format of presentation we have thought of as appropriate—or, at least, admissible and functional—is that of recounting the general features of the original research project within which the data here published were produced, so to favour the circulation of ideas.

An Adaptable Interactive System for Medical and Research Data Management

1974 ◽  
Vol 13 (04) ◽  
pp. 209-215 ◽  
Author(s):  
L. R. Baker
Keyword(s):  
Research Data ◽  
Interactive System ◽  
Modes Of Operation ◽  
Research Data Management ◽  
Base Management System ◽  
Data Base Management System ◽  
Base Management ◽  
Interactive Data ◽  
Key Features ◽  
New Applications

The design of interactive information systems that ease the implementation of new applications, and facilitate their use by persons (users and programmers) with varied levels of training remains a problem that has not been satisfactorily solved, although some progress is being made by many investigators. TIRRIS, an interactive data base management system in use at the Texas Institute for Rehabilitation and Research, includes features that permit it to adapt to a variety of applications, users, and terminals. Key features of the system, including capabilities, modes of operation, commands, and system tailoring options are described.

scholarly journals Evaluation of current genetic testing reports in German-speaking countries with regard to secondary use and future electronic implementation

2020 ◽  
Vol 28 (5) ◽  
pp. 558-566
Author(s):  
Teja Falk Radke ◽  
Simon J. Patton ◽  
Elisabeth Pantazoglou ◽  
Julian Sass ◽  
Sylvia Thun
Keyword(s):  
Genetic Testing ◽  
Personalised Medicine ◽  
Clinical Information ◽  
Basic Research ◽  
Scientific Data ◽  
Diagnostic Methods ◽  
Test Report ◽  
Critical Data ◽  
Secondary Use ◽  
German Speaking

AbstractModern diagnostic methods (next-generation sequencing) are one of the current hopes with regard to a personalised medicine. By applying detailed genetic analysis, it is possible to not only improve the prediction of potential risks (as, e.g., concerning hereditary breast cancer) but also the precision of therapy by targeting it to a specific genetic variant. However, there is no international standard for creating, structuring and/or transferring the results of a genetic test report. This type of test report often contains large amounts of complex information, and a standardised and consistent structure would offer potential benefits to all. These include reduced expenditure of time (due to the elimination of information-conversion steps), improved safety (due to a reduction in the occurrence of transmission errors, misunderstanding or misinterpretation of content) and improved clinical information gathering (by the respective linkage to scientific data and literature). Especially in regard to secondary use, a standardised (electronic) format would improve the suitability of these data in retrospective studies and basic research. In this study, we analysed the format and content of 96 genetic testing reports (germline and somatic) from Germany, Switzerland and Austria. Based on these results, we summarised and discussed potentially critical data that were demonstrated to be reported inconsistently, and propose a baseline structure for reporting that would also ease future electronic conversion.

scholarly journals Yin and yang: why big data needs little data

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
John Wright
Keyword(s):  
Mental Health ◽  
Big Data ◽  
School Readiness ◽  
Early Life ◽  
Data Linkage ◽  
Routine Data ◽  
Research Data ◽  
Limiting Factor ◽  
Small Data ◽  
The Impact

ABSTRACTObjectivesBig data and data linkage offer great potential for improving health, but the shallowness of much routine data is a major limiting factor. We explore how connecting wide routine data (big data) and deep research data (little data) can harness the real potential of data linkage. ApproachWe have linked routine clinical data from education and health (primary and secondary care) for a well-characterised birth cohort (Born in Bradford) with phenotype and genotype data on almost 14,000 families. We explore the potential for this combination of big and small data to address key research priorities in health and education research. ResultsWe present examples of the complementarity of routine and research data linkage in four varied domains: 1) Health care: how does postnatal mental health need (small data) match with mental health demand (big data)?2) Education: how do early life exposures (small data) influence school readiness and standardised assessment tests (big data)?3) Genetics: what is the impact of rare mutations (small data) on health service uptake (big data)?4) Public health: how can big data and small data be used to evaluate the effectiveness of early life interventions? Pros and cons of both big data and small data are identified. Some lifestyle and demographic factors are more likely to accurate from bespoke research data collection, but clinical and educational measures may be better gleaned from routine records. The reliability of the different sources of data is discussed. ConclusionsOur results illustrate the symbiosis of combining research and routine datasets. Opportunities for harnessing this power through combining routine data with cohort studies, clinical trials and national surveys are explored.

scholarly journals Making data science systems work

2020 ◽  
Vol 7 (2) ◽  
pp. 205395172093960
Author(s):  
Samir Passi ◽  
Phoebe Sengers
Keyword(s):  
Data Science ◽  
Reference Points ◽  
Third Party ◽  
Technical Design ◽  
Party Platforms ◽  
Cultural Aspects ◽  
Critical Data ◽  
The Third ◽  
Ethnographic Fieldwork ◽  
Business Goals

How are data science systems made to work? It may seem that whether a system works is a function of its technical design, but it is also accomplished through ongoing forms of discretionary work by many actors. Based on six months of ethnographic fieldwork with a corporate data science team, we describe how actors involved in a corporate project negotiated what work the system should do, how it should work, and how to assess whether it works. These negotiations laid the foundation for how, why, and to what extent the system ultimately worked. We describe three main findings. First, how already-existing technologies are essential reference points to determine how and whether systems work. Second, how the situated resolution of development challenges continually reshapes the understanding of how and whether systems work. Third, how business goals, and especially their negotiated balance with data science imperatives, affect a system’s working. We conclude with takeaways for critical data studies, orienting researchers to focus on the organizational and cultural aspects of data science, the third-party platforms underlying data science systems, and ways to engage with practitioners’ imagination of how systems can and should work.

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