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Crowdsourced Health Data Could Make Drugs Safer

6/22/2015

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Washington D.C. - The Food and Drug Administration (FDA) has announced a research partnership with PatientsLikeMe, an online patient community, to explore the potential for patient-generated health data to identify dangerous drugs. The FDA already collects data about instances of dangerous drug side effects, called adverse events, though its access to this information is limited to patients who voluntarily report adverse events directly to the FDA and aggregated data from insurers and electronic medical records. FDA hopes this new partnership, which grants it access to 110,000 adverse event reports related to 1,000 different medications from PatientsLikeMe users who voluntarily share their data, will allow for more a detailed understanding of how patients take medicine.

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NSF releases plan to increase access to funded projects

3/31/2015

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Washington D.C. - The National Science Foundation (NSF) unveiled a framework to increase public access to scientific publications and digital scientific data funded by NSF grants. The plan, entitled nsToday’s Data, Tomorrow’s Discoveries, will require that NSF-funded research presented in peer-reviewed scholarly journals and papers in juried conference proceedings or transactions be deposited in a database within one year of publication for the public to download, read, and analyze.

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OpEd: How Open Is University Data?

3/24/2015

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Washington D.C. - Daniel Castro of the Center for Data Innovation and vice president of the Information Technology and Innovation Foundation discusses how open the typical university is with the public: “Many states now support open data, or data that’s made freely available without restriction in a nonproprietary, machine-readable format, to increase government transparency, improve public accountability and participation, and unlock opportunities for civic innovation. To date, 10 states have adopted open data policies, via executive order or legislation, and 24 states have built open data portals. But while many agencies have joined the open data movement, state colleges and universities have largely ignored this opportunity. To remedy this, policymakers should consider how to extend open data policies to state colleges and universities.”

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