Open-Data Momentum Builds; Trialist Resistance May Be Futile
lterrat's bookmarks 2017-04-23
"The data summit included the point of view of clinical trial participants (ie, patients) on a number of panels. Most were unaware of the controversies around data sharing, and although they were sympathetic to the need for academicians to get credit for their hard work, they did not want this to be an impediment to greater sharing of their data. These study participants also wanted to get the data themselves in a form that they could understand. Matthew Might summarized the views of the sole all-patient panel as 'Share early, share often, share with me, share responsibly, and share understandably.'
Liberal data sharing is standard operating procedure in fields such as physics and genetics. Open-data converts from those sciences recognized the concerns of the guarded clinical trialists and offered words of reassurance: 'Once everybody does it... you will forget that you had these arguments,' promised Ewan Birney. NHLBI Director Gary Gibbons, MD, described more open-data sharing as a public good. 'The clinical trialists will appreciate that we probably can't continue to do business as usual,' he concluded. To reiterate that point, during the closing session, Dr Drazen requested a word from a Nobel Prize–winning poet and had Bob Dylan's 'The Times They Are A-Changin' played over the speakers.
The archived event is available to watch (with free registration) at the NEJM website."