A funny, clever and simple video intro into what can go wrong when you actually want to reuse someone else’s data in research:
Patents and access to medicines from a 2013 report on AIDS by Medicins Sans Frontieres:
Because millions of people need to be initiated and sustained on treatment regimens for life, it is as critical as ever to ensure ARVs [anti-retro-virals] are affordable. Competition among generic producers was instrumental in bringing down the price of the first generation of ARVs, and is one of the key reasons treatment could be scaled up to millions of people. Today, first-line ART is available for just under US$100 per person per year (ppy), which is a 99% decrease from 2000, when treatments still under patent were priced at more than $10,000 ppy.
But the situation today is different and the progress achieved is once again under threat. Key countries, especially India, where generics are produced, now grant medicine patents in order to comply with their international obligations as members of the World Trade Organization (WTO) [medicine patents re-introduced in 2005 after being abolished in 1970]. Newer ARVs are already patented in these countries, meaning that production of affordable generic medicines is now restricted, keeping monopoly prices high.
With upwards of 55 million people expected to need ARV therapy by the year 2030, global patent rules are contributing to a looming crisis as current drugs lose their effectiveness and their newer, patented replacements are priced out of reach for all but the wealthy.
I read War and Peace – and subsequently Anna Karenina – many years ago now. It was one of the most extraordinary and greatest books I had – and have – ever read. He is the Beethoven of literature.
Here I’m excerpting pieces.
“And by old habit he asked himself the question: “Well, and what then? What am I going to do?” And he immediately gave himself the answer: “Well, I shall live. Ah, how splendid!” The very question that had formally tormented him, the thing he had continually sought to find – the aim of life – no longer existed for him now. […] And this very absence of an aim gave him the complete, joyous sense of freedom which constituted his happiness at this time. He could not see an aim, for he now had faith – not faith in any kind of rule, or words, or ideas, but faith in an ever-living, ever-manifest God. Formerly he had sought Him in aims he set for himself. That search for an aim had been simply a search for God, and suddenly in his captivity he had learned not by words or reasoning but by direct feeling what his nurse had told him long ago: that God is here and everywhere. In his captivity he had learned that in Karataev God was greater, more infinite and unfathomable than in the Architect of the Universe recognised by the Freemasons. He felt like a man who after straining his eyes to see in the far distance finds what he sought at his very feet. All his life he had looked over the heads of the men around him, when he should have merely looked in front of him without straining his eyes. In the past he had never been able to find that great inscrutable infinite something. He had only felt that it must exist somewhere and had looked for it. In everything near and comprehensible he’d had only what was limited, petty, commonplace, and senseless. he had equipped himself with a mental telescope and looked into remote space, where petty worldliness hiding itself in misty distance had seemed to him great and infinite merely because it was not clearly seen. And such had European life, politics, Freemasonry, philosophy, and philanthropy seemed to him. But even then, at moments of weakness as he had accounted them, his mind had penetrated to those distances and he had there seen the same pettiness, worldliness, and senselessness. Now, however, he had learned to see the great, eternal, and infinite in everything, and therefore – to see it and enjoy its contemplation – he naturally threw away the telescope through which he had till now gazed over men’s heads, and gladly regarded the ever-changing, eternally great, unfathomable, and infinite life around him. And the closer he looked the more tranquil and happy he became. That dreadful question; “What for?” which had formerly destroyed all his mental edifices, no longer existed for him. To that question, “What for?” a simple answer was now always ready in his soul: “Because there is a God, that God without whole will not one hair falls from a man’s head.”
Very saddened to see that Caspar Bowden, first director of FIPR, and tireless digital rights campaigner has passed away. Fine obituary from Ross Anderson in EDRi-Gram:
Caspar moved to Microsoft in 2002 and worked for them for nine years as their Chief Privacy Adviser for Europe, the Middle East and Africa. What that actually entailed he described in a talk at the The 31st Chaos Communication Congress (31C3) that is linked at the bottom of this article; he was responsible for briefing and coordinating some of the activities of about forty executives, each of which managed the company’s relationships with some particular country. He pointed out to them that the The United States Foreign Intelligence Surveillance Court’s (FISA Court’s) powers meant that governments entrusting their data to US clouds were giving unfettered access to the US intelligence services. He was subsequently fired.
For the last four years of his life he was a strong critic of US surveillance and the failure of European institutions to do anything effective about it. He was a gifted communicator who could explain complex technical issues around wiretaps, surveillance and cryptography to policy and lay audiences.
I’m Rufus Pollock.
In 2004 I founded a non-profit called Open Knowledge
The mission we set ourselves was to open up all public interest information – and see it used to create insight that drives change.
What sort of public interest information? In short, all of it. From big issues like how our government spends our taxes or how fast climate change is happening to simple, everyday, things like when the next bus is arriving or the exact address of that coffee shop down the street.
For the last decade, we have been pioneers and leaders in the open data and open knowledge movement. We wrote the original definition of open data in 2005, we’ve helped unlock thousands of datasets. And we’ve built tools like CKAN, that powers dozens of open data portals, like data.gov in the US and data.gov.uk in the UK. We’ve created a network of individuals and organizations in more than 30 countries, who are all working to make information open, because they want to drive insight and change.
But today I’m not here to talk specifically about Open Knowledge or what we do.
Instead, I want to step back and talk about the bigger picture. I want to talk to you about digital age, where all that glitters is bits, and why we need to put openness at its heart.
Gutenberg and Tyndale
To do that I first want to tell you a story. Its a true story and it happened a while ago – nearly 500 years ago. It involves two people. The first one is Johannes Gutenberg. In 1450 Gutenberg invented this: the printing press. Like the Internet in our own time, it was revolutionary. It is estimated that before the printing press was invented, there were just 30,000 books in all of Europe. 50 years later, there were more than 10 million. Revolutionary, then, though it moved at the pace of the fifteenth century, a pace of decades not years. Over the next five hundred years, Gutenberg’s invention would transform our ability to share knowledge and help create the modern world.
The second is William Tyndale. He was born in England around 1494, so he grew up in world of Gutenberg’s invention.
Tyndale followed the classic path of a scholar at the time and was ordained as a priest. In the 1510s, when he was still a young man, the Reformation still hadn’t happened and the Pope was supreme ruler of a united church across Europe. The Church – and the papacy – guarded its power over knowledge, forbidding the translation of the bible from Latin so that only its official priests could understand and interpret it.
Tyndale had an independent mind. There’s a story that he got into an argument with a local priest. The priest told him:
“We are better to be without God’s laws than the Pope’s.”
“If God spare my life ere many years, I will cause the boy that drives the plow to know more of the scriptures than you!”
What Tyndale meant was that he would open up the Bible to everyone.
Tyndale made good on his promise. Having fled abroad to avoid persecution, between 1524 and 1527 he produced the first printed English translation of the Bible which was secretly shipped back to England hidden in the barrels of merchant ships. Despite being banned and publicly burnt, his translation spread rapidly, giving ordinary people access to the Bible and sowing the seeds of the Reformation in England.
However, Tyndale did not live to see it. In hiding because of his efforts to liberate knowledge, he was betrayed and captured in 1534. Convicted of heresy for his work, on the 6th October 1536, he was strangled then burnt at the stake in a prison yard at Vilvoorden castle just north of modern day Brussels. He was just over 40 years old.
So let’s fast forward now back to today, or not quite today – the late 1990s.
I go to college and I discover the Internet.
It just hit me: wow! I remember days spent just surfing around. I’d always been an information junkie, and I felt like I’d found this incredible, never-ending information funfair.
And I got that I was going to grow up in a special moment, at the transition to an information age. We’d be living in this magical world, where the the main thing we create and use – information – could be instantaneously and freely shared with everyone on the whole planet.
But … why Openness
So, OK the Internet’s awesome …
Bet you haven’t heard that before!
BUT … – and this is the big but.
The Internet is NOT my religion.
The Internet – and digital technology – are not enough.
I’m not sure I have a religion at all, but if I believe in something in this digital age, I believe in openness.
This talk is not about technology. It’s about how putting openness at the heart of the digital age is essential if we really want to make a difference, really create change, really challenge inequity and injustice.
Which brings me back to Tyndale and Gutenberg.
Because, you see, the person that inspired me wasn’t Gutenberg. It was Tyndale.
Gutenberg created the technology that laid the groundwork for change. But the printing press could very well have been used to pump out more Latin bibles, which would then only have made it easier for local priests to be in charge of telling their congregations the word of God every Sunday. More of the same, basically.
Tyndale did something different. Something so threatening to the powers that be that he was executed for it.
What did he do? He translated the Bible into English.
Of course, he needed the printing press. In a world of hand-copying by scribes or painstaking woodcut printing, it wouldn’t make much difference if the Bible was in English or not because so few people could get their hands on a copy.
But, the printing press was just the means: it was Tyndale’s work putting the Bible in everyday language that actually opened it up. And he did this with the express purpose of empowering and liberating ordinary people – giving them the opportunity to understand, think and decide for themselves. This was open knowledge as freedom, open knowledge as systematic change.
Now I’m not religious, but when I talk about opening up knowledge I am coming from a similar place: I want anyone and everyone to be able to access, build on and share that knowledge for themselves and for any purpose. I want everyone to have the power and freedom to use, create and share knowledge.
Knowledge power in the 16th century was controlling the Bible. Today, in our data driven world it’s much broader: it’s about everything from maps to medicines, sonnets to statistics. Its about opening up all the essential information and building insight and knowledge together.
This isn’t just dreaming – we have inspiring, concrete examples of what this means. Right now I’ll highlight just two: medicines and maps.
Everyday, millions of people around the world take billions of pills, of medicines.
Whether those drugs actually do you good – and what side effects they have – is obviously essential information for researchers, for doctors, for patients, for regulators – pretty much everyone.
We have a great way of assessing the effectiveness of drugs: randomized control trials in which a drug is compared to its next best alternative.
So all we need is all the data on all those trials (this would be non-personal information only – any information that could identify individuals would be removed). In an Internet age you’d imagine that that this would be a simple matter – we just need all the data openly available and maybe some way to search it.
You’d be wrong.
Many studies, especially negative ones, are never published – the vast majority of studies are funded by industry who use restrictive contracts to control what gets published. Even where pharmaceutical companies are required to report on the clinical trials they perform, the regulator often keeps the information secret or publishes it as 8,000 page PDFs each page hand-scanned and unreadable by a computer.
If you think I’m joking I’ll give just one very quick example which comes straight from Ben Goldacre’s Bad Pharma. In 2007 researchers in Europe wanted to review the evidence on a diet drug called rimonabant. They asked the European regulator for access to the original clinical trials information submitted when the drug was approved. For three years they were refused access on a variety of grounds. When they did get access this is what they got initially – that’s right 60 pages of blacked out PDF.
We might think this was funny if it weren’t so deadly serious: in 2009, just before the researchers finally got access to the data, rimonabant was removed from the market on the grounds that it increased the risk of serious psychiatric problems and suicide.
This situation needs to change.
And I’m happy to say something is happening. Working with Ben Goldacre, author of Bad Pharma, we’ve just started the OpenTrials project. This will bring together all the data, on all the trials and link it together and make it open so that everyone from researchers to regulators, doctors to patients can find it, access it and use it.
Our second example is maps. If you were looking for the “scriptures” of this age of digital data, you might well pick maps, or, more specifically the geographic data on which they are built. Geodata is everywhere: from every online purchase to the response to the recent earthquakes in Nepal.
Though you may not realize it, most maps are closed and proprietary – you can’t get the raw data that underpins the map, you can’t alter it or adapt it yourself.
But since 2004 a project called OpenStreetMap has been creating a completely open map of the planet – raw geodata and all. Not only is it open for access and reuse use the database itself is collaboratively built by hundreds of thousands of contributors from all over the world.
What does this mean? Just one example. Because of its openness OpenStreetMap is perfect for rapid updating when disaster strikes – showing which bridges are out, which roads are still passable, what buildings are still standing. For example, when a disastrous earthquake struck Nepal in April this year, volunteers updated 13,199 miles of roads and 110,681 buildings in under 48 hours providing crucial support to relief efforts.
The Message not the Medium
To repeat then: technology is NOT teleology. The medium is NOT the message – and it’s the message that matters.
The printing press made possible an “open” bible but it was Tyndale who made it open – and it was the openness that mattered.
Digital technology gives us unprecedented potential for creativity, sharing, for freedom. But they are possible not inevitable. Technology alone does not make a choice for us.
Remember that we’ve been here before: the printing press was revolutionary but we still ended up with a print media that was often dominated by the few and the powerful.
Think of radio. If you read about how people talked about it in the 1910s and 1920s, it sounds like the way we used to talk about the Internet today. The radio was going to revolutionize human communications and society. It was going to enable a peer to peer world where everyone can broadcast, it was going to allow new forms of democracy and politics, etc. What happened? We got a one way medium, controlled by the state and a few huge corporations.
Look around you today.
The Internet’s costless transmission can – and is – just as easily creating information empires and information robber barons as it can creating digital democracy and information equality.
We already know that this technology offers unprecedented opportunities for surveillance, for monitoring, for tracking. It can just as easily exploit us as empower us.
We need to put openness at the heart of this information age, and at the heart of the Net, if we are really to realize its possibilities for freedom, empowerment, and connection.
The fight then is on the soul of this information age and we have a choice.
A choice of open versus closed.
Of collaboration versus control.
Of empowerment versus exploitation.
Its a long road ahead – longer perhaps than our lifetimes. But we can walk it together.
In this 21st century knowledge revolution, William Tyndale isn’t one person. It’s all of us, making small and big choices: from getting governments and private companies to release their data, to building open databases and infrastructures together, from choosing apps on your phone that are built on open to using social networks that give you control of your data rather than taking it from you.
Let’s choose openness, let’s choose freedom, let’s choose the infinite possibilities of this digital age by putting openness at its heart.
Written on a train, some years ago
The tail-end of dusk,
Its softness making beauty of the world
The distant horizon pinked up in pastels
Beckons to eternity
While leftward lies darkness
Gathering all to her endless embrace.
The trees now shorn to subtlety
Are framed against the remnants of the sky
Trees, hedges, houses
All are soft shadows of themselves
And even a car-park sheathed in raucous lights
Can not offend.
The hemisphere runs in colours
Tuned to some resonance within
That calls out to savannah’s long ago
Beauty is leaving us and –
I cannot, cannot hold this,
Cannot make enough of my mind space
To seize this fleeting figure of the world
And make it fast.
First saw this very late at night about 1.5y ago. Brilliant and dark – much more so than the first one. It has an Ouroboros-ian nature.
On his interest in the girl: Existential crisis masquerading as infatuation.
A thought from a recent a recent Digital Supper: just as there is “Slow Food” do we need a “Slow Technology” movement – technology at a human pace.
A key difference is that this can’t work just from individual action – though that will help – we would need coordinated action if tech were to evolve slower.
I am delighted to announce we have found the newest member of the Open Knowledge team: Pavel Richter joins us as our new CEO!
Pavel’s appointment marks a new chapter in the development of Open Knowledge, which, over the last ten years, has grown into one of the leading global organisations working on open data and open knowledge in government, research, and culture.
Pavel has a rich and varied background including extensive time both in business and in the non-profit sector. In particular, Pavel brings his experience from over five years as the Executive Director of Wikimedia Deutschland: under his leadership, it grew to more than 70 staff, an annual budget of nearly 5 million Euros, and initiated major new projects such as Wikidata. Pavel’s engagement follows an extensive international search, led by a team including members of the Board of Directors as well as a Community Representative.
Personally, I am delighted and excited to welcome Pavel as CEO. This appointment represents an important step in the development of Open Knowledge as an organisation and community. Over the last decade, and especially in the last five years, we have achieved an immense amount.
Going forward one of our most important opportunities – and challenges – will be to forge and catalyse a truly global movement to put openness at the heart of the information age. Pavel’s experience, insight and passion make him more than equal to this task and I am thrilled to be able to work with him, and support him, as he takes on this role.
Dr Andy Beck of Harvard Medical School in Reddit AMA thread:
Interesting question. I think there is a lot of value in actually showing the utility of open data, by using it creatively to answer important research questions. There are now huge public databases available and growing everyday (e.g., https://tcga-data.nci.nih.gov/tcga/ , http://www.ncbi.nlm.nih.gov/geo/). I think it’s powerful to show a student that using open data they can answer a question in 5 minutes that previously may have taken an entire PhD dissertation to complete. In addition, to advocating through use of data, supporting high quality open access journals is also a great way to advocate. [Source]