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Note on Health Policy

Opening up the databanks – some good and a little bad

Recent clinical trials following thousands of people for years have produced the data that drives much of our current clinical guidelines. The databanks from these clinical trials have typically been closed to outside researchers for several years after the study ends. This means that only the researchers who secured the funding and ran the clinical trial are able to analyze and publish results from the trial. The New England Journal took a bold step away from this policy with an early release of the data early from a landmark clinical trial involving over a 100 different institutions that included almost 10,000 people followed for 5 years (the SPRINT research study). It was a ‘datapalooza’ contest approach that invited teams from around the world to take the data and come up with interesting findings, with winners announced this month. You have to love the idea of opening up this clinical trial data to everyone, to increase the opportunities for new findings.

The problem really comes from the current value criteria that is applied to scientists doing clinical research. Their opportunities to sustain their employment or to secure advancement are based almost entirely on their record of publication in leading journals. Obtaining funding for grants is very competitive (fewer than 20% of applications receive funding), and the work and time involved with successfully completing a large multi-center trial like SPRINT is quite large. Yet researchers receive little credit for this; only from their publications. To the researchers who put in years of effort running the study, seeing others swoop in to use their data and publish it, can seem quite unjust. This is why the data is usually held within the original research group for several years. Otherwise it seems like you planted, grew, and harvested your food crop, only to have someone else come by to take your crop to cook their own food.

One solution would be early release of clinical data, such as the New England Journal did for the SPRINT trial, but to also have academic institutions give much more value to the conception and performance of clinical trials than they do now. Kudos to the journal for pushing the envelope and forcing the necessary conversations to establish better academic policies.

See full text of Nature commentary here.

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