NEJM looks at sharing research without creating 'data dumpsters'

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Data sharing can make research available to all corners of the world. But if the amount of information remains unorganized, it can pile up into a “data dumpster." A recent article published by the New England Journal of Medicine sheds light on the data sharing market and the endless possibilities it brings to those in most need of the research.

Advancing technology has allowed data sharing between healthcare professionals with a click of a button, yet there is no set platform for sharing data without the inevitability of it becoming a “data dumpster," meaning a repository of information without the metadata, data dictionaries or documentation needed for meaningful or correct reanalysis. Another risk of expanding these repositories of data is the risk of widening the research-output gap between low- and high-resource countries.

Making data available does inevitably lead to analyses that are relevant, effective or ethical. If there is no requirement to involve primary researchers when conducting secondary research, data can be misinterpreted due to the lack of communication. Reusing data leads to no improvement in outcomes and produces incorrect results.

“More investment is needed in platforms that can standardize, clean and curate data into the usable formats that are required for sharing data effectively,” wrote Laura Merson, lead author, and colleagues. “Those systems will also have to ensure ethical and responsible data sharing that maximizes the use of available data. In global health, that means encouraging engagement from researchers around the world and ensuring appropriate acknowledgment of the data generators.”

One platform to base data sharing on is the WorldWide Antimalarial Resistance Network (WWARN). Established in 2009, WWARN was made to provide evidence on factors affecting the efficacy of antimalarial drugs with a focus on resistance. With a network of 260 collaborators in 70 countries, WWARN has successfully implemented the data sharing of clinical trial data on current antimalarials generated by academic groups and the pharmaceutical industry.

By increasing sample sizes, researchers have been able to identify trends and subpopulation effects with more accuracy, leading to improvements in global treatment guidelines of malaria. By unifying the information through data sharing, researchers can ensure the data can be analyzed by others and maximize the improvements to treatments being used around the world, especially to those in lower-income countries.

“Our primary aim is to support scientific communities in data sharing that is truly useful and that produces new knowledge that is used to change lives,” wrote Merson and colleagues.

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