[okfn-advisory] OpenTrials project [Confidential]

Peter Murray-Rust pm286 at cam.ac.uk
Thu Mar 19 19:17:25 UTC 2015

This is wonderful [I had hints of it but kept my mouth shut]. I'm working
very heavily in this area and spent Monday at UKCochrane in Oxford where we
(Contentmine.org) ran a 1-day workshop - Ben was there for the day and we
had a great deal to talk about and I will be very happy to bring
Contentmining to OpenTrials.

That links onto another success [also not formally signed off so please
keep quiet], also with OK(FN). Contentmine is part of a H2020 project
FutureTDM and we asked OK to partner with us and Sander vdW is running this
from the OK point of view (Jenny Molloy and I represent Contentmine.)

There is therefore a lot of synergy and I'm delighted to do whatever is


On Thu, Mar 19, 2015 at 11:14 AM, Denis Parfenov <denis.parfenov at gmail.com>

> Dear Rufus -
> Thank you for sharing exciting news. There is no doubt that such project
> will not only improve lives, but also save them.
> I did work for one of the Irish medical trial companies which collected
> data on behalf of major pharma companies and have a clear understanding
> what's in stake and what we are facing. Many of "big pharma" run their
> trials out of Ireland and increasingly using countries like India as their
> testing ground, taking advantage of poor and poorly educated people
> (informative piece on this subject from AlJazeera here
> <http://www.aljazeera.com/programmes/faultlines/2011/07/2011711112453541600.html>
> )
> We are really looking forward to hear more about this initiative and to
> play a part in it.
> Best regards,
> Denis
> --
> Denis Parfenov
> Open Knowledge Ambassador / Open Knowledge Ireland, Founder
> <https://openknowledge.ie/>
> https://openknowledge.ie/  | @OKFirl <https://twitter.com/OKFirl> |
> Google+ <https://plus.google.com/u/0/communities/106119681022861607353>
> *'Open minds to open actions'*
> m: +353863850044 | @prfnv <https://twitter.com/prfnv> [.org
> <http://prfnv.org/>]
> On 19 March 2015 at 09:01, Panagiotis Bamidis <bamidis at med.auth.gr> wrote:
>> Dear Rufus,
>> this is very good news and sounds very exciting indeed! It is very
>> relevant to on going work we have initiated here at OKF Greece and the
>> Medical School of the Aristotle University of Thessaloniki. In fact given
>> the large number of trials we have been doing since 2006 with new
>> technologies in active and healthy ageing trials as well as affective
>> neuroscience trials. Our plans were to start open the data so as for the
>> (insensitive) results to be widely available to those that could exploit
>> them semantically. As some of those trials involve the production of huge
>> datasets (with sensors and gaming alike the Quantified Self initiative)
>> opening them becomes very pivotal to our understanding.
>> So many thanks for sharing this info with us and please keep us informed.
>> We are happy to contribute into this if there is a need.
>> Best regards
>> Panos
>> Panagiotis D. Bamidis
>> Assist. Prof.,
>> Medical School,
>> Faculty of Health Sciences,
>> Aristotle University of Thessaloniki,
>> PO Box 376, 54124, Thessaloniki, Greece
>> --
>> tel: +30-2310-999310
>> fax: +30-2310-999702
>> mobile: +30-6972-008122
>> email: bamidis at med.auth.gr
>> On 19 March 2015 at 09:43, Rufus Pollock <rufus.pollock at okfn.org> wrote:
>>> Hi All,
>>> I wanted to let everyone know about an exciting new project OpenTrials
>>> that we are doing in collaboration with Ben Goldacre and the Centre for
>>> Open Science funded by the Arnold Foundation.
>>> Whilst funding has now been signed off we have not yet done the official
>>> first announcement so this is still confidential but I wanted to give the
>>> Advisory Council an early heads-up - especially as I know some members such
>>> as Peter are themselves directly interested in this.
>>> Draft PR is below.
>>> Regards,
>>> Rufus
>>> Open Trials: offering  increased transparency around clinical trials
>>> Open Knowledge is pleased to announce that it has been awarded a grant
>>> by the Arnold Foundation via the Centre for Open Science to work with Ben
>>> Goldacre to produce ‘Open Trials’ which will begin work on a comprehensive
>>> open database of clinical trials results and associated information.
>>> The principal investigator for this project, Dr Ben Goldacre, is a
>>> Clinical Research Fellow in the Centre for Evidence Based Medicine at the
>>> University of Oxford.  Ben Goldacre said: “there have been numerous
>>> positive statements about the need for greater transparency on information
>>> about clinical trials, over many years, but it has been almost impossible
>>> to track and audit exactly what is missing. This project aims to  draw
>>> together everything that is known around each clinical trial. The end
>>> product will produce valuable information for patients, doctors,
>>> researchers, and policymakers, not just on individual trials, but also on
>>> how whole sectors, researchers, companies and funders are performing. It
>>> will show who is failing to share information appropriately, who is doing
>>> well, and how standards can be improved.”
>>> Rufus Pollock said, “This is an incredible opportunity to identify which
>>> trial results are currently being withheld and to improve advocacy work
>>> around trial results. This is a perfect example of a project where opening
>>> up data and presenting in a usable form will have a direct impact -
>>> literally saving lives.  We’re absolutely delighted to partner with Ben
>>> Goldacre, a leading expert and advocate in this space, as well as with the
>>> Center for Open Science and the Arnold Foundation to do this
>>> ground-breaking project.”
>>> The Open Trials project will produce an open, easy-to-use database of
>>> information about the world’s clinical trials to improve access to research
>>> and increase transparency. Patients, doctors, researchers and policymakers
>>> use the evidence from clinical trials to make informed decisions about
>>> which treatment is best. But the best currently available evidence shows
>>> that around half of all clinical trial results are not published, with
>>> positive results twice as likely to be published as negative ones. In
>>> addition, much important information about the methods and results of
>>> clinical trials is only made  available outside the normal indexes of
>>> academic journals.
>>> Open Trials will will aggregate information from a wide variety of
>>> existing sources and will crowdsource additional information to provide a
>>> comprehensive picture of the effectiveness of the world’s medicines, and to
>>> monitor the transparency of essential information about clinical trials
>>> that should be made available to the public to assess the safety and
>>> effectiveness of a given treatment.
>>> It will help to automatically identify which trial results are currently
>>> being withheld, by matching registry data on trials that have been
>>> conducted against documents containing trial results. This will facilitate
>>> routine public audit of withheld results.  It will also enable more
>>> effective and coordinated advocacy around full reporting for all clinical
>>> trials, highlighting poor transparency and increasing pressure on
>>> legislators to improve regulation. It will also improve discoverability of
>>> other documents around clinical trials, which will be indexed and in some
>>> cases hosted. Lastly, it will help recruitment for clinical trials, by
>>> making information and commentary on ongoing trials more accessible.
>>> The first phase of the project will complete in March 2017.
>>> _______________________________________________
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Peter Murray-Rust
Reader in Molecular Informatics
Unilever Centre, Dep. Of Chemistry
University of Cambridge
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