Open Knowledge International is delighted to announce the launch of the public preview beta version of OpenTrials at a panel session on ‘Fostering Open Science in Global Health’ at the World Health Summit today, 10 October 2016, the world’s foremost forum for strategic questions of Global Health. OpenTrials is an open, online database of information about the world’s clinical trials funded by the Laura and John Arnold Foundation through the Center for Open Science. The project, which is designed to increase transparency and improve access to research, is directed by Dr. Ben Goldacre, an internationally known leader on clinical transparency, and is being built by Open Knowledge International.
OpenTrials works like a search engine, with advanced search options for filtering results by criteria such as drug and disease area. All data and documents for each trial included are “threaded” together and presented alongside each other. At the World Health Summit, the team will be demonstrating how the OpenTrials interface works, including how to explore trials and filter results by criteria such as drug and disease area. They will also demonstrate the power of linking clinical trial information together, showing how it can be used to highlight important discrepancies in the data.
We want the information provided on OpenTrials to inform decision-making and lead to better medical services worldwide. We expect a range of potential uses for the platform:
- A public health researcher could find out more about the range of trials on a drug, searching by various criteria to match a specific population.
- A doctor interested in critical appraisal of research papers could see if sources of bias for specific trials have already been assessed by experts.
- A researcher could see if the same trial reports somewhat different methods or results in different places.
- A patient interested in participating in a trial for their condition could identify trials in their geographical area which are enrolling.
A crowdsourcing functionality allows users to contribute data and documents and to provide feedback on the accuracy of trial information.
OpenTrials currently extracts and displays data from ClinicalTrials.gov, EU CTR, HRA, WHO ICTRP, and PubMed, and risk of bias assessments from the Cochrane Schizophrenia group. After the beta launch, we plan to integrate systematic review data from Epistemonikos and other sources. There are seven additional sources of data that have been extracted, but can’t currently be displayed because of licensing issues – we are working with these sources of data to get permission to publish. We’ll keep updating the OpenTrials blog as they become available.
“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, or easily identify discrepancies in information about trials” explained Dr. Goldacre, the project’s Chief Investigator and a Senior Clinical Research Fellow in the Centre for Evidence Based Medicine at the University of Oxford. “This project aims to draw together everything that is known around each clinical trial. The end product will provide 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 has the potential to show who is failing to share information appropriately, who is doing well, and how standards can be improved.”
“OpenTrials is an important step towards ensuring researchers, journalists, and patient groups have access to the medical information they need,” said Pavel Richter, CEO of Open Knowledge International. “Through the OpenTrials platform, researchers can advance science more quickly, doctors can easily find the latest evidence to improve services, and patients can locate information about pressing public health issues. OpenTrials is a great example of the work we are doing at Open Knowledge International to equip civil society organisations with the tools and information they need to address social problems and improve people’s lives.”
The first phase of the Open Trials project is scheduled for completion in March 2017. For project updates, please follow @opentrials on twitter or get in touch with us at [email protected]. A Hack Day (a World Health Summit Satellite event) took place on 8 October in Berlin. For more details, see https://opentrials.net/hackday
Further information on speakers and topics of the World Health Summit 2016:
The World Health Summit is open to media representatives:
Ben is a doctor, academic, writer, and broadcaster, and currently a Senior Clinical Research Fellow in the Centre for Evidence Based Medicine at the University of Oxford. His blog is at www.badscience.net and he is @bengoldacre on twitter. Read more here. His academic and policy work is in epidemiology and evidence based medicine, where he works on various problems including variation in care, better uses of routinely collected electronic health data, access to clinical trial data, efficient trial design, and retracted papers. In policy work, he co-authored this influential Cabinet Office paper, advocating for randomised trials in government, and setting out mechanisms to drive this forwards. He is the co-founder of the AllTrials campaign. He engages with policy makers. Alongside this he also works in public engagement, writing and broadcasting for a general audience on problems in evidence based medicine. His books have sold over 600,000 copies.
Open Knowledge International
Open Knowledge International is a global non-profit organisation focussing on realising open data’s value to society by helping civil society groups access and use data to take action on social problems. Open Knowledge International addresses this in three steps: 1) we show the value of open data for the work of civil society organizations; 2) we provide organisations with the tools and skills to effectively use open data; and 3) we make government information systems responsive to civil society.
The Laura and John Arnold Foundation
LJAF is a private foundation committed to producing substantial, widespread, and lasting reforms that will maximize opportunities and minimize injustice in our society. Its strategic investments are currently focused on criminal justice, education, public accountability, evidence-based policy, and research integrity. LJAF has offices in Houston, New York City and Washington D.C.
COS is a non-profit technology company providing free, open source software and services to increase inclusivity and transparency of research. COS supports shifting incentives and practices to align more closely with scientific values. COS develops the Open Science Framework as an infrastructure to enable a more open and transparent research workflow across all of the sciences.
World Health Summit
Under the high patronage of German Chancellor Angela Merkel, French President François Hollande and European Commission President Jean-Claude Juncker, the WHS attracts about 1,800 participants from more than 80 countries. It is the premiere international platform for exploring strategic developments and decisions in the area of healthcare.