September 9, 2004

Clinical Trials? Old News to E-Patients

Medical journal editors are grabbing headlines this week for demanding a registry of clinical trials, but in fact, they are just catching up to savvy e-patients who have been asking for the same thing for years.

On Tuesday, the Pharmaceutical Research and Manufacturers of America came out with a plan to create an online database of its members’ clinical trial results. On Wednesday, twelve of the most prestigious medical journals demanded the implementation of a registry of trials (not just results) and said they would not publish articles reporting the results of unregistered trials. And on Thursday, the American Medical Association presented their ideas about a clinical trials registry at a House Committee on Energy and Commerce subcommittee hearing.

The Pew Internet Project has found that 80% of Internet users have gone online to look for information about at least one of 16 health topics and many have become skilled researchers. They clamor for access to the latest information and then share it via email or in online discussion groups. These health seekers will no doubt applaud this week’s news regarding clinical trials.

The drumbeat has been building for many years, and was strengthened by the recent controversy about the negative effects of antidepressants on children, but is it possible that the Internet made a national clinical trials registry seem not only possible, but unavoidable?