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The European Investigative Journalism and Dataharvest Conference organised by Journalismfund.eu, is the most relevant networking event for investigative and data journalists in Europe. Dataharvest EIJC17 will take place on Friday 19, Saturday 20 and Sunday morning 21 May 2017, with a pre-conference Hack Day on Thursday 18 May.
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Saturday, May 20 • 09:30 - 10:30
Opening clinical trials data

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The information architecture of evidence-based medicine is broken - whole clinical trials are routinely left unpublished, exposing the medical literature to avoidable bias and exaggeration. When trials are published, the results are often misreported in academic journal articles. The same trials can be found reporting different results in different places, and the information in journal articles has been shown to be less complete than – and discrepant with – other sources like clinical study reports. Furthermore, key documents such as Case Report Forms and Ethics Committee paperwork are often left inaccessible, even though we know they can contain important information. We seek to help address this by building OpenTrials (explorer.opentrials.net) - an open, freely accessible database that can store, or link to, all publicly accessible data and documents on all trials in one place, building user-friendly windows onto this information. We have also built an open Application Programming Interface (API) allowing data scientists, programmers, and other power users to query the data at scale. We hope that placing all the information in one place will support informed decision-making by doctors, researchers, and patients. Additionally we hope that it will change norms surrounding sharing trial information, as it becomes easier to identify missing sources of information. From a investigative and data journalism perspective, there exist many potential stories in the data, including most/least transparent trial sponsors and focusing on particular drug/disease areas.

Speakers
avatar for Georgiana Bere

Georgiana Bere

Developer, OpenTrials
I am a programmer and a data geek interested in government transparency and anti-waste initiatives. Most of my work revolves around public procurements from EU countries.
avatar for Ben Meghreblian

Ben Meghreblian

Community Manager, OpenTrials
Ben is the Community Manager for OpenTrials, an Open Knowledge International project aiming to produce an open, easy-to-use, linked database of information about the world's clinical trials. He has a background in psychology and IT, and previously worked on the AllTrials... Read More →
avatar for Victor Nitu

Victor Nitu

Developer, The Sponge Media Innovation Lab
Victor Nitu is developer at The Sponge Media Innovation Lab.


Saturday May 20, 2017 09:30 - 10:30
C2.11

Attendees (11)