Nineteenth-Century Textspeak

- November 13, 2018 in abbreviation, origins of textspeak, textspeak

Poems from the Victorian era and before which anticipated 21st-century textspeak.

Open in order to ensure healthy lives and promote well-being for all at all ages

- November 12, 2018 in Open Access, Open Access Button, Open Science

The following blog post is an adaptation of a talk given at the OpenCon 2018 satellite event hosted at the United Nations Headquarters in New York City. Slides for the talk can be found here. When I started medical school, I had no idea what Open Access was, what subscriptions were and how they would affect my everyday life. Open Access is important to me because I have experienced first hand, on a day to day basis, the frustration of not being able to keep up to date with recent discoveries and offer patients up-to-date evidence-based treatment. For health professionals based in low and middle income countries the quest of accessing research papers is extremely time consuming and often unsuccessful. In countries where resources are scarce, hospitals and institutions don’t pay for journal subscriptions, and patients ultimately pay the price. Last week while I was doing rounds with my mentor, we came across a patient who was in a critical state. The patient had been bitten by a snake and was treated with antivenom serum, but was now developing a severe acute allergic reaction to the treatment he had received. The patient was unstable, so we quickly googled different papers to make an informed treatment decision. Unfortunately, we hit a lot of paywalls. The quest of looking for the right paper was time consuming. If we did not make a quick decision the patient could enter anaphylactic shock.

I remember my mentor going up and down the hospital looking for colleagues to ask for opinions, I remember us searching for papers and constantly hitting paywalls, not being able to do much to help. At the end of the day, the doctor made some calls, took a treatment decision and the patient got better. I was able to find a good paper in Scielo, a Latin American repository, but this is because I know where to look, Most physicians don’t. If Open Access was a norm, we could have saved ourselves and the patient a lot of time.This is a normal day in our lives, this is what we have to go through everytime we want to access medical research and even though we do not want it to, it ends up affecting our patients.
This is my story, but I am not a one in a million case. I happen to read stories just like mine from patients, doctors, and policy makers on a daily basis at the Open Access Button where we build tools that help people access the research they need without the training I receive. It is a common misconception to think that when research is published in a prestigious journal, to which most institutions in Europe and North America are subscribed, the research is easily accessible and therefore impactful, which is usually not the case. Often, the very people we do medical research to help are the ones that end up being excluded from reading it.

Why does open matter at the scale of diseases?

A few years ago, when Ebola was declared a public health crisis, the whole world turned to West Africa. The conventional wisdom among public health authorities believed that Ebola was a new phenomenon, never seen in West Africa before year 2013. As it turned out, the conventional wisdom was wrong. In 2015, the New York Times issued a report stating that Liberia’s Ministry of Health had found a paper that proved that Ebola existed in the region before. In the future, the authors asserted, “Medical personnel in Liberian health centers should be aware of the possibility that they may come across active cases and thus be prepared to avoid nosocomial epidemics” This paper was published in 1982, in an expensive, subscription European journal. Why did Liberians not have access to the research article that could have warned about the outbreak? The paper was published in a European journal, and there were no Liberian co-authors in the study. The paper costs $45, which is the equivalent of 4 days of salary for a medical professional in Liberia. The average price of a health science journal is $2,021, this is the equivalent of 2.4 years of preschool education, 7 months of utilities and 4 months of salary for a medical professional in Liberia. Let’s think about the impact open could have had in this public health emergency. If the paper had been openly accessible, Liberians could have easily read it. They could have been warned and who knows? Maybe they could have even been able to catch the disease before it became a problem. They could have been equipped with the qualities they needed to face the outbreak. They could have asked for funds and international help way before things went bad. Patients could have been informed and campaigns could have been created. These are only a few of the benefits of Open Access that we did not get during the Ebola outbreak.

What happens when open wins the race?

The Ebola outbreak is a good example of what happens when health professionals do not get access to research.However, sometimes Open Access wins and great things happen. The Human Genome Project was a pioneer for encouraging access to scientific research data. Those involved in the project decided to release all the data publicly. The Human Genome data could be downloaded in its entirety, chromosome by chromosome, by anyone in the world. The data sharing agreement required all parts of the human genome sequenced during the project to be distributed into the public domain within 24 hours of completion. Scientists believed that these efforts would accelerate the production of the human genome. This was a deeply unusual approach , with scientists by default not publishing their data at the time. When a private company wanted to patent some of the sequences, everyone was worried, because this would mean that advances arising from the work, such as diagnostic tests and possibly even cures for certain inherited diseases, would be under their control. Luckily, The Human Genome Project was able to accelerate their work and this time, open won the race. In 2003, the human genetic blueprint was completed. Since that day, because of Open Access to the research data, the Human Genome Project has generated $965 billion in economic output, 295 billion in personal income, 4 billion in economic output and helped developed at least 30% more diagnostic tools for diseases (source). It facilitated the scientific understanding of the role of genes in specific diseases, such as cancer, and led to the development of a number of DNA screening tests that provide early identification of risk factors of developing diseases such as colon cancer and breast cancer. The data sharing initiative of the Human Genome Project was agreed after a private company decided to patent the genes BRCA1 & 2 used for screening breast and colon cancer. The company charged nearly $4,000 for a complete analysis of the two genes. About a decade after the discovery, patents for all genes where ruled invalid. It was concluded that gene patents interfere with diagnosis and treatment, quality assurance, access to healthcare and scientific innovation. Now that the patent was invalidated, people can get tested for much less money. The Human Genome Project proved that open can be the difference between a whole new field of medicine or private companies owning genes.

Call to action

We have learned how research behind a paywall could have warned us better about Ebola 30 years before the crisis. In my work, open would save us crucial minutes while our patients suffer. Open Access has the power to accelerate advancement not only towards good health and well being, but towards all sustainable development goals. I have learned a lot about open because of excellent librarians, who have taken the time to train me and help me understand everything I’ve discussed above. I encourage everyone to become leaders and teachers in open practices within your local institutions. Countries and organizations all over the world look up to the United Nations for leadership and guidance on what is right, and what is practical. By being bold on open, the UN can inspire and even enable action towards open and accelerate progress on SDGs. When inspiration doesn’t cut it, The UN and other organizations can use their power as funders to mandate open . We can make progress without Open Access, and we have for a long time, but while we make progress with closed, with open as a foundation things happen faster and equality digs in. Health inequality and access inequality exists today, but we have the power to change that. We need open to be central, and for that to happen we need you to be able to see it as foundational as well.   Written by Natalia Norori with contributions by Joseph McArthur, CC-BY 4.0.  

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Open Knowledge Festival 2019 planning kickoff Thu 22.10.

- November 9, 2018 in Events, OK Festival

Welcome to join us for the Open Knowledge Festival 2019 kickoff at Maria 01, door 5E, room Nudist on Thu 22.10. 17-18:30! Facebook event: https://www.facebook.com/events/870128053377047/ Finland hosted the Open Knowledge Festival back in 2012 and it was one of the igniting moments from Open Knowledge Finland. The event featured talks, tracks and workshops on a diverse range of issues related to openness such as Open Data, Open GLAM, Open Democracy, Open GIS to name just a few. Since our good friends at the MyData conference decided to go global with it’s own organization this year perhaps 2019 might be the year we highlight the other cool stuff related to openness that is in the works and bubbling under to reinvent what Open Knowledge and Open Knowledge Finland is all about. The conference is just an idea now but let’s explore what we’d like to make out of it! Join the #okfest2019 channel on the Open Knowledge Finland Slack to continue the discussion: https://okfi.slack.com/messages/CE1APPXE2/ In case you’re not yet on the OKFI Slack, you can get an invite here: https://okfi-slack.herokuapp.com/ The post Open Knowledge Festival 2019 planning kickoff Thu 22.10. appeared first on Open Knowledge Finland.

Landscapes of the Western Front, 1914–1918

- November 8, 2018 in panoramas, shells, trenches, warfare, western front, world war one, ww1

Photographs for official army panoramas that offer, a century after their strategic function has passed, a strange and haunting portrait of WW1.

Landscapes of the Western Front, 1914–1918

- November 8, 2018 in panoramas, shells, trenches, warfare, western front, world war one, ww1

Photographs for official army panoramas that offer, a century after their strategic function has passed, a strange and haunting portrait of WW1.

Escola de Dados realiza Coda.Br nos dias 10 e 11 de novembro

- November 7, 2018 in academia, Coda.Br, conferência, dados, Destaque, Escola de Dados, Evento, Jornalismo de dados, Métodos Digitais, métricas, monitoramento

Mais de 40 palestrantes nacionais e internacionais estão confirmados para a terceira edição da Conferência Brasileira de Jornalismo de Dados e Métodos Digitais, Coda.Br, organizada pela Escola de Dados. O evento ocorre em São Paulo nos dias 10 e 11 de novembro, na ESPM. Confira a programação completa e inscreva-se no site: coda.escoladedados.org. O Coda.Br recebe Jeremy Merril da ProPublica, premiadíssimo veículo norte-americano de jornalismo investigativo; Alberto Cairo, referência internacional quando o assunto é visualização de informações; Fernanda Viegas, pesquisadora sênior do Google; Neale El-Dash, cientista político fundador do Polling Data; entre outras dezenas de especialistas já confirmados.   Como conseguir evidências ou boas histórias utilizando bases de dados públicas? Que tal criar mapas para visualizar sua informação espacialmente? Ou usar a linguagem R para analisar políticas governamentais? São mais de 60 horas de workshops, apresentações e oficinas práticas com convidados nacionais e internacionais. Não sabe por onde começar? O Coda.Br vai ter momentos de debates abertos e atividades introdutórias para ensinar a lidar com bases de dados massivas, usando Python ou SQL, por exemplo. Mas se você quer aprofundar, vale conferir as atividades sobre Machine Learning ou quem sabe se aventurar nos workshops de Estatística Avançada ou Processamento de Linguagem Natural aplicados ao jornalismo. Além das mesas e dos workshops práticos, o evento vai ter espaços de networking sobre dados abertos, bootcamps de 6h para quem deseja aprender a programar em Python ou R e sessões de mentoria no estilo “Traga seu problema”, onde os participantes vão poder tirar dúvidas de projetos em andamento ou já realizados. Ainda há ingressos disponíveis. Garanta já o seu aqui. (Dica: junte um grupo de quatro ou mais amigos, colegas de trabalho ou da faculdade, para conseguir descontos. Basta entrar em contato no e-mail de contato da Escola de Dados) Se você já está mais certo que as planilhas, confirme também no evento no Facebook e convide amigos por lá. Ajude a notícia a chegar em possíveis interessados e ampliar a comunidade de jornalistas e cientistas de dados no Brasil. Esperamos você lá! Flattr this!

Ολοκλήρωση ημερίδας: «Σχεδιάζοντας δίκαιες υποστηρικτικές δομές για την Ανοικτή Γνώση»

- November 7, 2018 in Featured, Featured @en, News, ανοικτή πρόσβαση, Εκδηλώσεις, Νέα

Με επιτυχία πραγματοποιήθηκε η ημερίδα «Σχεδιάζοντας δίκαιες υποστηρικτικές δομές για την Ανοικτή Γνώση», την οποία συνδιοργάνωσαν η Βιβλιοθήκη & Κέντρο Πληροφόρησης (ΒΚΠ ΑΠΘ) και το Ίδρυμα Ανοικτής Γνώσης Ελλάδος (Open Knowledge Greece). Η εκδήλωση έλαβε χώρα με αφορμή την Open Access Week 2018, δίνοντας έμφαση στις υποδομές και τη δυνατότητα παροχής ενός ολοκληρωμένου οικοσυστήματος εργαλείων για την υποστήριξη […]

Το OK Greece στη διημερίδα για τα «Μαθηματικά των Πόλεων»

- November 7, 2018 in Featured, Featured @en, News, ανοικτή πρόσβαση, Εκδηλώσεις, μαθηματικά, Νέα

Το «παρών» στη διημερίδα για τα «Μαθηματικά των Πόλεων», την οποία διοργάνωσε στη Θεσσαλονίκη η Περιφερειακή Ένωση Δήμων Κεντρικής Μακεδονίας (ΠΕΔ ΚΜ), έδωσε το  Ίδρυμα Ανοικτής Γνώσης Ελλάδας. Η διημερίδα πραγματοποιήθηκε με αφορμή την ανακήρυξη του 2018 ως «έτους Μαθηματικών», προς τιμήν των 100 χρόνων από την ίδρυση της Ελληνικής Μαθηματικής Εταιρείας. Στο πλαίσιο αυτής […]

East of the Sun and West of the Moon, illustrated by Kay Nielsen (1922 edition)

- November 6, 2018 in fairytales, folktales, golden age of illustration, illustration, Kay Nielsen, norway

Book of Norwegian fairytales and one of the finest creations to emerge from the golden age of illustration.

Eine Chance für Open Hardware: das Recht auf Reparatur

- November 6, 2018 in Uncategorized

In einer Zeit, in der große Teile der technischen Apparate Daten verarbeiten, hat die Forderung nach transparenter Technik einen hohen Stellenwert: Wie erfasst das Smartphone seine Umgebung, welche Daten werden erhoben und wohin gelangen sie? Open Source, das Offenlegen des technischen Aufbaus und die Verwendung von freien Lizenzen, ist hier das bekannte Schlagwort. Während Open Source für den Bereich der Software ein verbreitetes Thema ist und freie Software weite Teile der Softwareentwicklung bereichert, steckt Open Source Hardware noch in den Kinderschuhen. Schlimmer noch: Wer sich an die 50er und 60er Jahre erinnert, weiß, dass der Schaltplan oft fester Bestandteil erworbener Geräte war. Heute verschwinden sie immer mehr in verklebten Gehäusen und sollen möglichst wenige Gründe zum Öffnen geben – eine technische Dokumentation liefert nur die nötigsten Informationen. Wenn wir uns nicht weiter von der Technik entkoppeln, wenn wir ihr Herrschaftspotential verringern möchten, muss es grundsätzlich die Möglichkeit geben, sie zu durchdringen. Das erfordert eine offene Dokumentation, aber auch ein Design der Geräte selbst, welches das Öffnen ermöglicht. Diese Forderungen stechen sich mit dem allgemeinen Verständnis von der Vermarktung von technischen Geräten: Gibt es eine offene Dokumentation, so ist die Angst groß, dass andere sie gleichermaßen vermarkten. Produzierende, wie Arduino, XYZ Cargo und andere, zeigen allerdings, dass es auch anders geht. Der Verdacht ist groß, dass der Wille klein ist, neue Geschäftsmodelle zu entwickeln. Lieber wird sich auf das Altbekannte verlassen.

Open Hardware: Um was geht es genau?

Aber was genau macht offene Hardware aus? Denn technische Geräte unterliegen rechtlich erst mal nicht dem Urheberrecht. Erst das Patent verwehrt die Nachnutzung durch Dritte. Geht es also schlicht um die Patentierung? Nein: Wie auch bei Software ermöglicht es erst die Dokumentation ein Produkt vollständig zu verstehen – mit dem Unterschied, dass bei Hardware von der Dokumentation auch die Reproduzierbarkeit abhängt: “Open source hardware is hardware whose design is made publicly available so that anyone can study, modify, distribute, make, and sell the design or hardware based on that design,” (Open Source Hardware Association). Die Frage, wie diese Offenlegung des Designs für Hardware genau auszusehen hat, ist weitaus schwerer zu beantworten als für Software – zu viele Parameter spielen für die Reproduzierbarkeit eine Rolle. Eine konkrete und praxistaugliche Anleitung zur Dokumentation von Open Hardware hat das Forschungsprojekt „OPEN! Methods and tools for community-based product development“ entwickelt. Antworten zur Frage nach der richtigen Lizenz gibt die Open Source Hardware Association.

Das Recht auf Reparatur macht Open Hardware vermittelbar

Es scheinen also viele Weichen gestellt, um Open Hardware praktisch umzusetzen. Warum passiert trotzdem so wenig? Eine Antwort ist die fehlende Öffentlichkeit: Open Hardware ist ein schwer vermittelbares Nischenthema. Das Recht auf Reparatur kann das ändern. Es kann Open Hardware aus der Blase der technisch Involvierten heraustragen und für Laien greifbar problematisieren. Denn hier zeigt sich für Verbrauchende ganz praktisch, welche Hürden aus geschlossenen Systemen entstehen, wie schwer es ist, defekten Geräten zu neuer Funktion zu verhelfen: Verklebte Gehäuse verhindern das Öffnen, fehlende Dokumentationen das Nachvollziehen, kaum vorhandene Ersatzteile das Reparieren. Radikal: Das Gerät gehört nicht wirklich den Kaufenden. Um ein Gerät sein Eigentum nennen zu können, muss man auch das Recht und die Möglichkeit der Reparatur haben.

Mehr Öffentlichkeit für das EU-Ecodesign-Paket!

Auf EU-Ebene gibt es aktuell kaum wahrgenommene Anstrengungen, das Recht auf Reparatur zu strukturieren. Wir müssen diese Debatte nutzen und befeuern, um Open Hardware greifbar zu kommunizieren und rechtlich zu verankern. Konkret geht es um das EU-Ecodesign-Paket, dessen Beschließung noch bis vor Kurzem auf unbestimmte Zeit verschoben werden sollte. Ein offener Brief sowie eine Petition haben dazu beigetragen, das zu verhindern. Dennoch braucht es mehr Druck, damit die Entscheidung im Sinne der Verbraucher getroffen wird. Indem wir die Debatte mit den Erfahrungen und Forderungen aus dem Bereich der Open Hardware bereichern, tragen wir dazu bei, dass das Recht auf Reparatur nicht bei den Forderungen nach mehr Modularisierung von technischen Produkten und Bereithaltung von Ersatzteilen stehen bleibt. Das Ziel ist die offene Dokumentation.