In the research world, only a fraction of findings make it into the public realm — which is a huge loss of knowledge that could be used more widely in the scientific community to further exploration and discoveries, says University of Alberta researcher Dr. Karim Fouad.
“In traditional research dissemination, studies often report only summary figures, not raw data, and negative results are frequently never published at all, so results get funnelled through an extremely narrow bottleneck,” he notes.
“It’s like squeezing a lemon and you just get one droplet out, but all the rest is lost. And that’s a shame, because it creates a massive loss of information, reporting bias and research funding that doesn’t reach its full impact.”
It’s a gap that Fouad, a professor in the Faculty of Rehabilitation Medicine, is working to address as co-director of the Open Data Commons for Spinal Cord Injury (ODC-SCI) platform, a repository of scientific findings on research in the field.
The project, started in 2019, has just received a boost of more than US$3 million in combined total funding from the Craig H. Neilsen Foundation, the Christopher & Dana Reeve Foundation and Wings for Life.
The digital platform aims to include all spinal cord injury research, not just published results, to fully leverage the value of research information by making it widely accessible and shareable. Through measures such as organized curation, as well as better access to raw data, the information can then be used in a greater range of studies and discovery work, says Fouad, Canada Research Chair in Spinal Cord Injury.
“It fights waste in research,” he says. “Data can be pooled, independently analyzed and reused. Publication bias can be reduced, and consistent data management will allow researchers to interpret findings properly into the far future. Along with that, redundant work can be avoided and better decisions can be made when translating research to the clinic.”
The platform can also help researchers with preparing well-organized and machine-readable data that can then be readily fed into AI for analysis, he adds. “In the time of machine learning, we can harness all of our big data.”
The funding will support researchers in managing their work to avoid unorganized data dumps, and the platform will be upgraded with new software tools to aid them in spotting typos or outliers in their data, connecting with AI and searching the repository.
Collaborative work will also be done with the U.S. National Institutes of Health to develop common data elements and reporting standards, making it simpler to combine and compare data sets from different laboratories, Fouad notes.
Promoting greater data-sharing among scientists through initiatives like the ODC-SCI platform is vital to accelerating health research and can “dramatically improve translational success,” turning laboratory discoveries into real-world treatments for patients, he adds.
“Though we are paving the way through the relatively small field of spinal cord injury research, it’s exciting that this work is basically revolutionizing research knowledge translation.”