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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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New Open Access Button launches as part of Open Access Week

- October 22, 2014 in Featured Project, Open Access, Open Access Button

This post is part of our Open Access Week blog series to highlight great work in Open Access communities around the world. button Push Button. Get Research. Make Progress. If you are reading this, I’m guessing that you too are a student, researcher, innovator, an everyday citizen with questions to answer, or just a friend to Open Knowledge. You may be doing incredible work and are writing a manuscript or presentation, or just have a burning desire to know everything about anything. In this case I know that you are also denied access to the research you need, not least because of paywalls blocking access to the knowledge you seek. This happens to me too, all the time, but we can do better. This is why we started the Open Access Button, for all the people around the world who deserve to see and use more research results than they can today. Yesterday we released the new Open Access Button at a launch event in London, which you can download from openaccessbutton.org. The next time you’re asked to pay to access academic research. Push the Open Access Button on your phone or on the web. The Open Access Button will search the web for version of the paper that you can access. If you get your research, you can make progress with your work. If you don’t get your research, your story will be used to help change the publishing system so it doesn’t happen again. The tool seeks to help users get the research they need immediately, or adds papers unavailable to a wish-list we can get started . The apps work by harnessing the power of search engines, research repositories, automatic contact with authors, and other strategies to track down the papers that are available and present them to the user – even if they are using a mobile device. The London launch led other events showcasing the Open Access Button throughout the week, in Europe, Asia and the Middle East. Notably, the new Open Access Button was previewed at the World Bank Headquarters in Washington D.C. as part of the International Open Access Week kickoff event. During the launch yesterday, we reached at least 1.3 million people on social media alone. The new apps build upon a successful beta released last November that attracted thousands of users from across the world and drew lots of media attention. These could not have been built without a dedicated volunteer team of students and young researchers, and the invaluable help of a borderless community responsible for designing, building and funding the development. Alongside supporting users, we have will start using the data and the stories collected by the Button to help make the changes required to really solve this issue. We’ll be running campaigns and supporting grassroots advocates with this at openaccessbutton.org/action as well as building a dedicated data platform for advocates to use our data . If you go there you now you can see the ready to be filled map, and your first action, sign our first petition, this petition in support of Diego Gomez, a student who faces 8 years in prison and a huge monetary fine for doing something citizens do everyday, sharing research online for those who cannot access it. If you too want to contribute to these goals and advance your research, these are exciting opportunities to make a difference. So install the Open Access Button (it’s quick and easy!), give it a push, click or tap when you’re denied access to research, and let’s work together to fix this problem. The Open Access Button is available now at openaccessbutton.org.

AΠΟΚΤΗΣΤΕ ΠΡΟΣΒΑΣΗ ΣΕ ΕΠΙΣΤΗΜΟΝΙΚΟ ΠΕΡΙΕΧΟΜΕΝΟ ΠΑΓΚΟΣΜΙΩΣ ΜΕ ΤΟ OPEN ACCESS BUTTON

- October 21, 2014 in Featured, Featured @en, Open Access, Open Access Button, Εκδηλώσεις, Νέα

Open Access Button logo - horizontal

Ερευνητές, φοιτητές αλλά και απλοί πολίτες σε όλο τον κόσμο χρησιμοποιούν επιστημονικό υλικό για ερευνητικούς, εκπαιδευτικούς ή και άλλους σκοπους. Πολύ συχνά η πρόσβαση στην επιστημονική γνώση περιορίζεται καθώς οι χρήστες αδυνατούν να πληρώσουν τα επιβαλλόμμενα ποσά. Το Open Access Button δημιουργήθηκε με σκοπό να διευκολύνει την πρόσβαση στην επιστημονική έρευνα. Μπορείτε να το χρησιμοποιήσετε για τις έρευνες σας μέσω από τις εφαρμογές που είναι διαθέσιμες για κινητά τηλέφωνα αλλά και για browsers στη διεύθυνση openaccessbutton.org.

Η διευκόλυνση της Ανοιχτής Πρόσβασης στην έρευνα είναι πρωταρχική λειτουργία του Open Access Button. Ετσι, όταν εντοπίσετε ένα άρθρο το οποίο θέλετε να συμβουλευτείτε, το Open Access Button ερευνά αυτόματα για μία ενδεχόμενη έκδοση του άρθρου χωρίς περιορισμούς (μέσω εργαλείων όπως το Google Scholar και το CORE). Εάν μία τέτοια εκδοχή του άρθρου δεν υπάρχει διαθέσιμη, μια σειρά ενεργειών τίθεται σε λειτουργία έτσι για να δοθεί έμφαση στην ανάγκη Ανοιχτής Πρόσβασης στο συγκεκριμένο άρθρο. Για παράδειγμα, ενημερώνεται ο συγγραφέας του άρθου και του ζητείται να το αναδημοσιεύσει σε Ανοιχτή Πρόσβαση. Τέλος, οι χρήστες έχουν τη δυνατότητα να μοιραστούν τους λόγους για τους οποίους χρειάζονται το συγκεκρίμενο άρθρο και να συμμετέχουν στη δημιουργία ένος διαδραστικού χάρτη που θα αποτελείται από παρόμοιες ιστορίες χρηστών παγκοσμίως.

Το Open Access Button λειτούργησε αρχικά σε μορφή beta από τον Νοέμβριο του 2013, έχοντας συγκεντρώσει σχεδόν 10.000 μαρτυρίες χρηστών οι οποίοι αντιμετώπισαν προβλήματα πρόσβασης σε επιστημονικό περιεχόμενο. Οι εφαρμογές δημιουργήθηκαν από μία ομάδα εθελοντών που απαρτίζεται κυρίως από φοιτητές και ερευνητές με την πεποίθηση πως η ανοιχτή πρόσβαση στην έρευνα είναι πολύ σημαντικό κομμάτι για την πρόοδο της επιστημονικής γνώσης.

Η επίσημη παρουσίαση του Open Access Button γίνεται στα πλαίσια του Open Access Week, στο οποίο συμμετέχει και το OKFN Ελλάδας μαζί με τη Βιβλιοθήκη και το Κέντρο Πληροφόρησης ΑΠΘ.

Το Open Access Button προωθεί την Ανοιχτή Πρόσβαση προτείνοντας τρόπους δημοσίευσης επιστημονικής γνώσης χωρίς περιορισμούς στους ενδιαφερόμενους ερευνητές. Για να γίνεις μέλος της παγκόσμιας κοινότητας της Ανοιχτής Πρόσβασης, λάβε δράση στο openaccessbutton.org.

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Open Access og open science snak skudt igang i København – vil du være med?

- September 30, 2014 in åben videnskab, Biologigaragen, Open Access, Open Access Button

2014-09-25 17.25.37 I sidste uge lagde Café Nutid i København hus til et meetup, hvor man kunne blive klogere på begreber som Open Access, åben videnskab og folkeforskning (også kaldet citizen science). Det valgte lidt over 10 mennesker at benytte sig af, og det blev til et par særdeles hyggelige timer med inspirerende oplæg, gode diskussioner og spændende tanker om videre udforskning af disse områder i Danmark. Først på programmet var David Carroll, som foruden at være en anerkendt drivkraft i det internationale Open Access bevægelse også står bag det særdeles succesfulde projekt Open Access Button. David arbejder i øjeblikket nogle uger i Danmark, og kunne således benytte lejligheden til at møde nysgerrige fra det danske miljø omkring disse begreber.

Open Access og Open Access Button

David fortalte dels om Open Access generelt og dels om arbejdet med at udvikle Open Access Button, der er en browser bookmarklet, som man gratis kan installere og bruge til tage del i en global indsats for at visualisere i hvor høj grad størstedelen af verdens forskning er indespærret bag jurisdisk og teknisk lås og slå.
Knappen fungerer således, at man klikker på den hver gang man støder på en paywall i forskningshenseende, og så bliver afspærringen kortlagt og visualiseret i Open Access Button’s data mapping. Disse data bruger communitiet så til at lægge pres på de gatekeepers, som står bag de mange pay-walls (som ofte beskytter forskning der er betalt med skattekroner) samt lede efter åbne alternativer, og resultatet har indtil nu været en kæmpe success med tusindevis af frigjorde dokumenter til følge. Jo flere mennesker der bruger Open Access Button, jo stærkere bliver værktøjet og de data som fællesskabet producerer.
David løftede endvidere sløret for nogle spændende nye tiltag som sættes i søen over den næste tid. Hvis du som læser her vil vide mere om dette, så følg David på Twitter på @davidecarroll og Open Access Button på @OA_Button. Det kan også anbefales at besøge Open Access Button’s hjemmeside, og du kan endvidere se hans slides fra præsentationen. 2014-09-25 17.25.01

Biologigaragen, DIY-BIO og den globale citizen science bevægelse

Dernæst overtog Martin Malthe Borch, som i København er én af drivkræfterne bag en masse forskellige initiativer, herunder Labitat hackerspacet, citizen science foreningen Biologigaragen og ikke mindst festivalen Kopenlab, som løb af stablen som en del af den store ESOF 2014 konference “Science In The City” på Carlsberg i København i sommers. Malthe fortalte om principperne bag citizen science/folkeforskning, do-it-yourself-biologi (DIY-BIO) og tog endvidere gruppen på en tur igennem en række meget inspirerende projekter på både lokalt og internationalt plan, ikke mindst flere af dem han og Biologigaragen er praktisk involveret i. Følg Malthe på Twitter på @mmborch og dyk ned i Biologigaragens spændende univers på biologigaragen.dk.

Skal vi have flere Open Access og open science netværksaktiviteter i Danmark og København?

Den sidste del af meetup’et blev brugt til at snakke om bl.a. om det var muligt at stable nogle faste meetups på benene omkring dagens temaer – og det var der umiddelbart stor interesse for. Således håber vi fra Open Knowledge Danmarks og Biologigaragens side, at flokken der mødtes (og/eller andre som læser dette) tager initiativ til et næste arrangement – vi er klar til at støtte op, deltage og endvidere tilbyde vores infrastruktur til koordinering (eksempelvis OKFN-DK’s åbne diskussionsliste og Biologigaragens Google Group). Opfordringen er hermed givet! Noterne fra meetup’et kan ses her (bl.a. med mere detaljeret referat – omend ikke alt er med): https://pad.okfn.org/p/OpenScienceMeetupCPH