Institute of Medicine Soliciting Comments on Data Sharing

The Institute of Medicine (IOM) is seeking feedback, via a discussion framework, on methods for sharing clinical trial data across disciplines while maintaining transparency, patient privacy, and earning the public’s trust.

Currently, according to IOM, much of the clinical trial data generated by pharmaceutical companies and academic researchers is accessibly only to those whose studies generated it and not shared with the public. However, the framework notes, sharing clinical trial data “could facilitate new analyses and a deeper understanding of a particular therapy or condition.”

There are now some data sharing initiatives that have been fruitful, Modern Healthcare notes, for instance, the existing data sharing projects between the National Institutes of Health and pharmaceutical and medical device companies.

The discussion framework, released January 22, 2014, “outlines the committee’s preliminary thoughts on guiding principles that underpin the responsible sharing of clinical trial data, defines key elements of data and data sharing activities, and describes a selected set of data sharing activities.”

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