[okfn-advisory] OpenTrials project [Confidential]

Rufus Pollock rufus.pollock at okfn.org
Thu Mar 19 07:43:30 UTC 2015

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.



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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