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In early April, the New England Journal of Medicine (NEJM) held a 1.5-day event in Boston called "Aligning Incentives for Sharing Clinical Trial Data" which was broadcast on the Web. Panels featured clinical trialists, data analysts, and patient participants—the three groups with interests in data—as well as government and funding agencies. To explore the potential benefits of data sharing ahead of the event, NEJM launched the SPRINT Data Analysis Challenge. The National Institutes of Health (NIH)- sponsored SPRINT trial compared intensive (≤120 mm Hg) versus standard blood pressure control in hypertensive patients at high cardiovascular risk. Challenge entrants were invited to analyze the dataset underlying the main publication and identify a novel finding that advances medical science. The three winners presented on day one of the webinar.
Watching the data summit online and following the Twittersphere (#NEJMDataSummit storified), data analysts and trial participants came across as open-data evangelicals, while clinical trialists who expressed concerns about misuse of data and lost career opportunities seemed like the "get off my lawn" old guard. Most trialists were not against the concept of data sharing but wanted an extended period of exclusive access and gatekeepers to control who got access as opposed to a more liberal free-for-all.
Medscape asked some attendees for feedback. Open-data proponent Atul Butte, MD, PhD (UCSF) emailed that he was optimistic and "saw a lot of change in attitudes during the summit." However, research-participant representative Sharon Terry (CEO, Genetic Alliance), who has two children with a rare disease, was "not surprised by the paternalistic, protectionist, conservative stance of the trialists" and "did not sense any transformation in their thinking."
More here http://www.medscape.com/viewarticle/878670
In early April, the New England Journal of Medicine (NEJM) held a 1.5-day event in Boston called "Aligning Incentives for Sharing Clinical Trial Data" which was broadcast on the Web. Panels featured clinical trialists, data analysts, and patient participants—the three groups with interests in data—as well as government and funding agencies. To explore the potential benefits of data sharing ahead of the event, NEJM launched the SPRINT Data Analysis Challenge. The National Institutes of Health (NIH)- sponsored SPRINT trial compared intensive (≤120 mm Hg) versus standard blood pressure control in hypertensive patients at high cardiovascular risk. Challenge entrants were invited to analyze the dataset underlying the main publication and identify a novel finding that advances medical science. The three winners presented on day one of the webinar.
Watching the data summit online and following the Twittersphere (#NEJMDataSummit storified), data analysts and trial participants came across as open-data evangelicals, while clinical trialists who expressed concerns about misuse of data and lost career opportunities seemed like the "get off my lawn" old guard. Most trialists were not against the concept of data sharing but wanted an extended period of exclusive access and gatekeepers to control who got access as opposed to a more liberal free-for-all.
Medscape asked some attendees for feedback. Open-data proponent Atul Butte, MD, PhD (UCSF) emailed that he was optimistic and "saw a lot of change in attitudes during the summit." However, research-participant representative Sharon Terry (CEO, Genetic Alliance), who has two children with a rare disease, was "not surprised by the paternalistic, protectionist, conservative stance of the trialists" and "did not sense any transformation in their thinking."
More here http://www.medscape.com/viewarticle/878670
