Photo: Paul Harris
Scientists across the globe can share their data on a new digital platform, pooling their knowledge, discoveries, and skills to fast track vital treatments for COVID-19.
The International Data Research Alliance and Data Analysis Workbench aims to entice researchers to share their findings, data-sets, or metadata securely to uncover treatments that could save thousands of lives and curb the suffering caused by coronavirus.
The alliance co-founders and major donors include Australia’s Minderoo Foundation, the Bill and Melinda Gates Foundation, Chan Zuckerberg Initiative, Mastercard, and Wellcome. The international consortium hopes the workbench will break down research silos that stymie progress and open access to emerging data to accelerate the development of therapies for COVID-19.
"The only way we’re going to relegate COVID-19 to the dustbin of history is through open data sharing and collaboration," Minderoo Foundation chairman Andrew Forrest said.
"Collaboration must be the new normal."
More than 9 million people have been diagnosed and 472,171 have died of COVID-19 across at least 188 countries, according to the Johns Hopkins University database.
There are presently at least 1570 clinical trials studying more than 50 drugs, the Global Coronavirus COVID-19 Clinical Trial Tracker shows.
Professor Steve Webb, chairman of the global COVID-19 clinical trial REMAP-CAP, said the data-sharing platform was groundbreaking, solving a problem in science research that predates the pandemic.
"There are multiple clinical trials answering the same question. Each trial occurs in a silo and the data is not released until the trial is finished. Yet if all the trials cooperated and shared their data while they were still recruiting they might have found the answer months or even years earlier," Professor Webb said.
"Globally, tens of thousands of people are dying of COVID each week. If an effective treatment is discovered just one week earlier that is literally tens of thousands of lives saved."
The challenge will be convincing trials to agree to provide their data, he said.
The executive director of the Minderoo Foundation's COVID-19 Response, Steve Burnell, said: "all discoveries should be made available equally and not hoarded for any one country's or organization's purposes".
Dr. Steven Kern, deputy director of quantitative sciences at the Bill and Melinda Gates Foundation said the workbench would allow researchers to access data that could validate, redirect, or build on their own work.
Crucially, their own data would be secure and ensure the privacy of patients who participated in their studies. It was also imperative that researchers responsible for contributing were credited, Dr. Kern said.
“This is about advancing science as fast as possible by learning from each other,” Dr. Kern said. “It becomes a matter of bricks-on-bricks to build a wall that is about understanding how this disease works.”
Trials that run the risk of not being able to recruit enough patients could pool their partially completed data with other similar trials to gain some insight, Dr. Kern said.
The recent controversy over a hydroxychloroquine study that drew on a suspect, potentially fabricated, patient data highlighted the challenges of securing reliable data.
“We want to make sure that scientists working in countries where they don’t have a lot of resources have access to data and knowledge from high-income countries,” Dr. Kern said.
The workbench offers varying levels of data-sharing, depending on how open, or closely guarded researchers are willing or able to be.
“A researcher with her own dataset can bring it to the workbench because she wants to work with datasets like it, and another group of researchers might decide they want to work with her data in a safezone ... where they feel comfortable to open up and share their outcomes or their actual data, respecting the privacy under which the data was collected,” Dr. Kern said.
A higher level of restriction would allow researchers to share only their metadata to the workbench. Other research groups can then create software programs that interface with the metadata, learn from the data itself, then return to the workbench.
“It’s like playing a game of cards. You know your hand and the hand on the table,” he said.
Researchers will maintain control over their own work. The alliance will not hold or control the data and has tasked Health Data Research UK to supervise the workbench primarily for its record of securely and ethically managing sensitive datasets, most notably the UK’s hospital patient records.
Members are encouraged also to list their datasets on the Health Data Research Innovation Gateway so that anyone conducting research on COVID and other disease outbreaks can request access.
The workbench - developed and managed by Scottish data science company Aridhia - compliments the philanthropists’ Therapeutics Accelerator - a $125 million initiative to identify potential treatments for COVID-19, fast track their development and capabilities to manufacture and equitably distribute millions of doses worldwide.
The platform is designed to be useful long after pandemic abates to develop therapies for future pandemics and the global fight against other diseases such as cancers.