Earlier this week the Guardian and the BBC reported on a landmark ruling in India which will hopefully pave the way for greater access to lifesaving generic drugs in developing countries.
The Indian supreme court has rejected a new patent on a “slightly altered” version of Glivec, a cancer treatment drug developed by the pharmaceutical company Novartis. They concluded that the Novartis’s changes were an attempt at ‘evergreening’, making small changes in order to gain a new patent.
Médecins Sans Frontières (MSF) said that the ruling will “save a lot of lives across the developing world”, and the Cancer Patients Aid Association in India (CPAA) said it is “a huge victory for human rights”.
The ruling highlights the importance of addressing the profound imbalance in the way that potentially life-saving knowledge is shared. We need laws, policies and practises that recognise the value of sharing and collaboration around critical information, rather than focusing exclusively on protection and compensation.
Dr Unni Karunakara, the International President of Médecins Sans Frontières said:
At the moment medical innovation is financed through high drug prices backed up by patent monopolies, at the expense of patients and governments in developing countries who cannot afford those prices. Instead of seeking to abuse the patent system by bending the rules and claiming ever longer patent protection on older medicines, the pharmaceutical industry should focus on real innovation, and governments should develop a framework that allows for medicines to be developed in a way that also allows for affordable access.
The fact that many key drugs have only been possible thanks to [..] “vital investments made by the public sector” is nearly always overlooked by defenders of the pharma patent system. It’s another reason why the Indian Supreme Court’s decision is not only right, but just.
As well as fairer, more balanced laws and policies supporting the development of life-saving generic drugs in developing countries, we want to see more open access to the results of medical research – especially that which is publicly funded.
As we wrote about a few weeks ago, we think a major part of this will be an open database of clinical trials to give doctors, patients and researchers access to information about the results and methods of trials related to the drugs that they research, prescribe and take.
If you’re interested in following our work in this area, you can join our open-science discussion list by filling in your details in the form below:
Speaking at the launch of a new global Research Data Alliance, she said that we are entering a new “era of open science”, which will be “good for citizens, good for scientists and good for society”.
She explicitly highlighted the transformative potential of open access, open data, open software and open educational resources – mentioning the EU’s policy requiring open access to all publications and data resulting from EU funded research.
She also alluded to the EU’s work encouraging national funding bodies to adopt similar approach to publicly funded research, and recent policy developments in the US and Australia.
The Research Data Alliance says it “aims to accelerate and facilitate research data sharing and exchange” and currently lists a number of working areas such as metadata harmonisation and legal interoperability.
While there does not yet appear to be an explicit focus on open data per se, we hope that the new organisation will take a principled, ‘open by default’ approach to data sharing, in line with the Panton Principles, and commensurate with Commissioner Kroes’s speech.
As always, our Open Science Working Group will continue to monitor and engage with relevant initiatives and policy developments in this area as they unfold. If you’d like to help us you can join our open-science discussion list, by signing up below:
A significant number of groups who support knowledge policies for the public good, including ourselves, have signed and published a letter of concern arising from one of the working groups of the Licences for Europe – A Stakeholder Dialogue meetings in Brussels.
This particular working group was Working Group 4, which was set to discuss ways and means of enabling Text and Data Mining (TDM) for research. I was present as both a user of mining techniques in my academic research and official representative of the Open Knowledge Foundation, as participant in the discussions.
The letter expresses concerns that in this TDM meeting we were presented “not with a stakeholder dialogue, but a process with an already predetermined outcome –namely that additional licensing is the only solution to the problems being faced by those wishing to undertake TDM”
We believe that this dialogue should fairly include discussion of copyright limitations and exceptions for such TDM activity. The Vice-President of the European Commission responsible for the Digital Agenda Neelie Kroes (pictured above) made a speech shortly before the working group meeting which indicated this would be an option to consider on the table of discussion:
But keep your minds open: maybe in some cases licensing won’t be the solution
It was also in the notes published in advance of the working group meeting that discussion would explore:
the potential and possible limits of standard licensing models
(emphasis mine)
Yet when we started discussions, all our attempts to discuss copyright exemptions for TDM, as successfully practised in the US, Japan, Israel, Taiwan and South Korea, were quickly shut-down by the dialogue moderators. It was made crystal clear to us that any further attempts to discuss this as a solution to the problems of TDM access would not be entertained. Many of us left the meeting feeling extremely frustrated that we were prevented from discussing what we thought was a reasonable and optimal solution practised elsewhere, and were only allowed to discuss sub-optimal cumbersome options involving re-licencing of content or collective licencing.
Thus the letter of concern finishes with 3 simple requests:
All evidence, opinions and solutions to facilitate the widest adoption of TDM are given equal weighting, and no solution is ruled to be out of scope from the outset;
All the proceedings and discussions are documented and are made publicly available;
DG Research and Innovation becomes an equal partner in Working Group 4, alongside DGs Connect, Education and Culture, and MARKT – reflecting the importance of the needs of research and the strong overlap with Horizon 2020.
The greater than 50 participants & signatories of the letter include a Nobel Prize winner (Sir John Sulston), and top representatives of most European research funders, libraries and even smart tech companies with an interest in this area like Mendeley. We sincerely hope the European Commission takes action on this matter.
On Friday 22nd February, 2013 the U.S. Office of Science and Technology Policy (OSTP) released a statement to say that the “Obama Administration is committed to the proposition that citizens deserve easy access to the results of scientific research their tax dollars have paid for”. This was accompanied by a new policy memorandum and a long-awaited response by OSTP Director John Holdren to the ‘We The People’ petition that was signed by over 65,000 people calling for expanded public access to research.
Advocates of green open access were pleased to see this new directive and Peter Suber in particular gives a nice clear summary of it in a Google+ post. With up to 12-month embargoes allowed before research can be self-archived even the Association of American Publishers wrote a statement of support for this new policy.
A comparison with the United Kingdom’s RCUK policy, clearly shows the OSTP to be the weaker of the two:
Breadth: OSTP applies only to scientific research, whereas RCUK’s applies to Arts, Humanities, and Social Sciences research too.
Immediacy: OSTP allows 12 month embargoes, whilst RCUK accepts a maximum embargo of only 6 months for STM research
Coverage: OSTP policy applies only to Federal agencies with more than $100M in R&D expenditures, whilst RCUK’s applies to all RCUK funded research – no exceptions.
Some would say this is no bad thing. The OSTP policy is certainly more lenient on publishers and thus is likely to be uncontroversially implemented. Hopes for stronger OA policy in the USA are emboldened by the recent Fair Access to Science and Technology Research (FASTR) Act which proposes to shorten the maximum embargo time allowed to just 6-months, in-line with RCUK policy.
Finally, the pleasant surprise for everyone with this new OSTP policy is the specific and explicit inclusion of access to data not just publications, in section 4 titled Objectives for Public Access to Scientific Data in Digital Formats aiming to:
“Maximize access, by the general public and without charge, to digitally formatted scientific data created with Federal funds”
The United States of America has now clearly joined the global movement towards open access to taxpayer-funded research. We think the world will certainly benefit from this new policy.
On February 15-16 we are updating the Open Research Data Handbook to include more detail on sharing research data from scientific work, and to remix the book for different disciplines and settings. We’re doing this through an open book sprint. The sprint will happen at the Open Data Institute, 65 Clifton Street, London EC2A 4JE.
The Friday lunch seminar will be streamed through the Open Economics Bambuser channel. If you would like to participate, please see the Online Participation Hub for links to documents and programme updates. You can follow this event at the IRC channel #okfn-rbook and follow on twitter with hashtags #openresearch and #okfnrbook.
The Open Research Data Handbook aims to provide an introduction to the processes, tools and other areas that researchers need to consider to make their research data openly available.
Join us for a book sprint to develop the current draft, and explore ways to remix it for different disciplines and contexts.
Who it is for:
Researchers interested in carrying out their work in more open ways
Experts on sharing research and research data
Writers and copy editors
Web developers and designers to help present the handbook online
Anyone else interested in taking part in an intense and collaborative weekend of action
What will happen:
The main sprint will take place on Friday and Saturday. After initial discussions we’ll divide into open space groups to focus on research, writing and editing for different chapters of the handbook, developing a range of content including How To guidance, stories of impact, collections of links and decision tools.
A group will also look at digital tools for presenting the handbook online, including ways to easily tag content for different audiences and remix the guide for different contexts.
Agenda:
Where: 65 Clifton Street, EC2A 4JE (3rd floor – the Open Data Institute)
Friday, February 15th
13:00 – 13:30: Arrival and sushi lunch
13:30 – 14:30: Open research data seminar with Steven Hill, Head of Open Data Dialogue at RCUK.
14:30 – 17:30: Working in teams
Friday, February 16th
10:00 – 10:30: Arrival and coffee
10:30 – 11:30: Introducing open research lightning talks (your space to present your project on research data)
11:30 – 13:30: Working in teams
13:30 – 14:30: Lunch
14:30 – 17:30: Working in teams
17:30 – 18:30: Reporting back
As many already registered for online participation we will broadcast the lunch seminar through the Open Economics Bambuser channel. Please drop by in the IRC channel #okfn-rbook
The AllTrials initiative calls for all clinical trials to be reported and for the “full methods and the results” of each trial to be published.
Currently negative results are poorly recorded and positive results are overhyped, leading to what Goldacre calls ‘research fraud’, misleading doctors about the drugs they are prescribing and misleading patients about the drugs they are taking.
There have been some big wins in the past 48 hours. The lead legislator for a new EU Clinical Trials Regulation recently came out in favour of transparency for clinical trials. Today GlaxoSmithKline announced their support for the campaign, which, as Goldacre says, is “huge, and internationally huge”.
As well as continuing to push for stronger policies and practises that support the release of information about clinical trials, we would like to see a public repository of reports and results that doctors, patients and researchers can access and add to. We need an open database of clinical trials.
Over the past few days we’ve been corresponding with Ben and others on the AllTrials about how we might be able to work together to create such a database – building on the prototyping work that was presented at last year’s Strata event.
Hot on the heels of the recent House of Lords inquiry, there is also a separate Business, Innovation and Skills (BIS) Committee inquiry into the new Research Councils UK open access mandate focusing on economic aspects. There were only 70 or so written evidence submissions to the House of Lords inquiry and few were from active researchers. Other countries around the world are closely following developments with UK policy so it is globally important that the UK mandate remains strong.
For this new BIS inquiry we think you might want to submit written evidence. You need not be a UK resident or national. In fact, since the UK contributes 6% of the world’s academic research output (and 14% of the highly cited output) we’re all stakeholders in this. Open access benefits the world, academics and non-academics alike.
The Committee will consider a range of topics including:
The Government’s acceptance of the recommendations of the Finch Group Report ‘Accessibility, sustainability, excellence: how to expand access to research publications’, including its preference for the ‘gold’ over the ‘green’ open access model;
Rights of use and re-use in relation to open access research publications, including the implications of Creative Commons ‘CC-BY’ licences;
The costs of article processing charges (APCs) and the implications for research funding and for the taxpayer; and
The level of ‘gold’ open access uptake in the rest of the world versus the UK, and the ability of UK higher education institutions to remain competitive.
They are not particularly looking for general endorsements of Open Access. That is thankfully a given, unchangeable policy direction. As I understand it they are looking for relevant evidence to the points above, only.
Written evidence should be sent to the Committee, as an MS Word document, by e-mail to biscommem@parliament.uk. The deadline for BIS submissions is 7 February 2013, further details here.
The Open Knowledge Foundation is particularly concerned about the confusion in many recent blog posts in certain quarters over what Creative Commons licences actually do. Some have been attempting to portray the Creative Commons Attribution licence (CC BY) as against ‘author rights’ or against ‘academic freedom‘. It would be good to make clear the benefits of CC BY, perhaps even specifically in terms of economics and economic benefits.
This is a rare opportunity for for our voices to be heard in a policy-guiding process. We should not waste this opportunity. Commercial academic publishers will almost certainly be submitting their viewpoints and interests, so we should equally ensure that our interests in intelligent openness are represented here too.
It’s our pleasure to invite you to join the Citizen Science Open Technical Workshop to be held Wednesday 30th January 16:00 CET virtually using Google Hangout.
Over 2 hours, we’ll have expert talks and open discussions about technologies for volunteer computing and thinking projects like:
BOINC, the popular volunteer computing desktop middleware used in scientific projects like Seti@Home where volunteers donate their computing resources for analyzing radio telescope data, Einstein@Home where you could help analyzing weak astrophysical signals from spinning neutron stars, or CERN’s LHC@Home where the users help the physicists to develop and exploit particle accelerators like CERN’s Large Hadron Collider.
BOSSA, a distributed thinking framework for creating scientific projects where the volunteers perform tasks that require human intelligence, knowledge, or cognitive skills. An example of this technology is the project Transcribe Bleek & Lloyd where the volunteers help to transcribe Bushman hand written documents.
PyBossa, the OKFN’s framework for volunteer thinking projects where volunteers could participate in scientific applications like Feynman’s Flowers where the volunteers help to study how molecules interact with the surfaces they are stuck to, ForestWatchers.net where the users can help to detect deforested areas from satellite images in forests, or for example helping in damage assessment cases like with the Pablo Typhoon or oil spills by Shell experienced by the company in the Niger Delta (Nigeria).
The deadline for nominations in the annual BioMed Central Open Data Awards is on January 31st. Get your votes in now!
It’s been a big year for open science in general, and for BioMed Central in particular. We’ve been hard at work promoting the value of data-sharing, developing standards to make it more attractive to researchers, and offering tools to make open publishing even easier. Recognising the importance of citation and reuse tracking in motivating researchers to publish openly, we’ve been promoting standards for data-citation including data DOIs (Digital Object Identifiers) as link-able URLs. Through our technology partnership with LabArchives, all our authors can now get 100Mb of free storage and the ability to assign DOIs to their datasets, and thereby create permanent data citations.
This standard is exemplified by various datasets deposited in GigaDB, the database underpinning BioMed Central and BGI’s revolutionary “big data” journal GigaScience, which published its first articles in July 2012.
Critically, GigaDB uses the Creative Commons CC0 waiver for published datasets making data open in compliance with Open Knowledge Foundation principles. We’ve been pushing open licensing since 2010, but in September 2012 we launched a formal public consultation on changing the copyright system in science publishing to better support open data. Look out for the full, public report on the outcomes in early 2013.
The Open Data Award
But the Open Data Award is a celebration of the work of our authors. Authors who have gone the extra mile to make their science reproducible; their analyses re-computable; and so, fundamentally, their data as open as possible. We look for scientists who have published in BioMed Central journals and have demonstrated leadership in the sharing, standardization, publication, or re-use of biomedical research data.
Last year’s winner exemplified the award’s criteria superbly. The International Stroke Trial group, led by Peter Sandercock published the anonymised 19,000 individual patient data from one the largest trials in acute stroke ever conducted. This kind of transparency is sadly still uncommon in this field, and the data are already being used by at least two other groups since its release.
I’m hoping we will unearth an equally important example of “data sharing done well” from our 2012 publications. As in previous years the authors of Panton Principles – Peter Murray-Rust, John Wilbanks, Rufus Pollock and Cameron Neylon – will be assisting with the judging process, along with Earl Buetler, CEO of LabArchives. With less than a week to go before we begin the judging process, please nominate soon!
Citizen science occurs when data for scientific research is collected by members of the public in a voluntary capacity. Public participation in environmental projects, in particular, has been described as a global phenomenon.
But there is a stigma associated with these types of projects. The data collected are often labelled untrustworthy and biased. Research in this area continues to show however, that data collected by what is essentially a non-professional workforce, are comparable to those collected by professional scientists.
Provided steps are in place to deal with data integrity, we have much to gain by putting more trust in citizen scientists.
Across the globe thousands of people collect data on everything from counts of stars in distant galaxies to the timing of flowering events. Volunteers have long been collecting data on the health of coral reefs, and ornithologists encourage volunteers to collect data on bird migration.
Citizen science has benefits for scientists – including an inexpensive and potentially large labour force – and citizens, who get knowledge and fulfilment. These schemes expose people to the environment and develop the stewardship ethic.
But what motivates my interest in this area is the potential to create a more scientifically literate society; building the capacity for people to take information they receive in their everyday lives and then being able to make informed choices based on the what they have learned. Those choices could be anything from the products they buy as consumers or the political parties they support.
Volunteers collecting data in the field John Gollan
Sounds good: what’s the problem?
While citizen science projects vary in their study subjects, the ecosystem of interest and objectives of the research, they all face one important challenge that jeopardises their success, sustainability, integrity and in general, acceptance in the wider scientific community. Many scientists question the quality, reliability and in general, the utility of data.
Evidence for the stigma associated with citizen science projects comes from different sources. One was a long standing community-based program to survey diversity of bird species. Researchers found the estimated numbers of birds changed through time simultaneously with changes in the observers. It was concluded that the trends detected were not likely to represent real changes in bird abundance, but were more likely due to prejudices of the individual observers.
The negative perception of citizen projects is not new. Twenty years ago, the use of volunteer data came into the international spotlight when an amendment was made to prohibit the US National Biological Survey from accepting the work of volunteers. This was supported by two arguments in the House of Representatives declaring that volunteers are incompetent and biased.
Are volunteers’ data that bad?
Questions over data integrity continue to this day. It’s surprising, because a growing body of literature shows that data collected by citizens are comparable to those of professional scientists.
For example, researchers have detected no differences between field samples of aquatic invertebrates that were collected and identified by volunteers and professionals. A similar study showed that data collected by volunteers and scientists agreed 96% of the time.
Both studies concluded that volunteers could collect reliable data and make assessments that were comparable to those made by highly trained professionals.
My own research on vegetation metrics collected as part of ecosystem restoration projects also showed that the degree of agreement of data collected by volunteers can be as good as those recorded by professional scientists.
Young and old can be inspired to appreciate nature through hand-on experiences John Gollan
Results showed that scientists as a collective group collected data that was in closer agreement with “the truth” than those of volunteers. But when data collected by individuals were analysed, some volunteers collected data that were in similar or closer agreement to the truth, than scientists. Both groups’ estimates were in closer agreement for particular attributes than others, also suggesting that some attributes are more difficult to estimate or are more subjective than others.
An important message from these studies is that data-integrity issues can occur. But it’s just a matter of honing in on those particular issues and addressing them if necessary. This can be through training to improve skill sets or calibrating data where possible.
It should not be a case of blaming the citizens. The scientist behind such programs should have checks in place – citizen science project or otherwise!
A final thought
It is perhaps too simple to reason that the “success” or “failure” of a citizen science project will be determined by the degree to which data collected by volunteers agree with those of scientists. Citizens in environmental projects using self-funded volunteer labour have, and should be valued for more than just the potential for cost savings.
Research has shown that volunteers experience high levels of many different satisfactions. For example, participants gain educational benefits, there is potential to reunite science and society, the public can be inspired to appreciate nature through hands-on experiences and participants can build a sense of ownership in both the program and place.
These unmeasured benefits are achievements in themselves and it may be far better to concentrate on these as a focus of success. Such benefits will engender a society that will protect our environment at a time when it’s needed most.
