[okfn-advisory] OpenTrials project [Confidential]

Denis Parfenov denis.parfenov at gmail.com
Thu Mar 19 11:14:11 UTC 2015

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

We are really looking forward to hear more about this initiative and to
play a part in it.

Best regards,

Denis Parfenov

Open Knowledge Ambassador / Open Knowledge Ireland, Founder

https://openknowledge.ie/  | @OKFirl <https://twitter.com/OKFirl> | Google+

*'Open minds to open actions'*

m: +353863850044 | @prfnv <https://twitter.com/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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