Posted on: Sep 9, 2012 10:14AM
The National Library of Medicine recently terminated support for a number of open access biomedical research data repositories. These are data sets generated at considerable public expense, and they underlie a great deal of on-going research. We need to encourage the Fed to not only sustain but also to grow these resources. In the era of big data, it is shortsighted that we cannot see a way to support public repositories of biomedical data.
On a related issue, the Centers for Medicare and Medicaid Services (CMS) holds vast troves of data related to healthcare delivered through these programs, but most of this data is not accessible for research use. Our ability to implement post market safety monitoring programs, evaluate care effectiveness and detect trends in disease would be greatly enhanced by improved access to CMS data. We need open access to all the tools and data available to find the causes and effective cures for breast cancer as quickly as possible.
Sign the We the People petition encouraging enhanced Federal support for open access biomedical data repositories. We need 25,000 signatures within 30 days.