Patients complain that it is difficult to get information about the status of research. It is expensive to buy copies of Journal articles and it is not convenient to go to medical libraries where they can access the articles for free. News articles do not report all medical studies and when they do they may not give enough information to help patients in their decision making process. Even more troubling is if an earlier study shows promise and this is publicized but follow up trials do not support the early hope. Do those unsuccessful follow up study results get published? Can patients and their physicians be making decisions on incomplete information?
The United States Congress is currently looking at this situation as they looking at reform at the FDA. As part of the process the Congressional Research Service has produced a report for congressional leaders. As part of this report they have compared the various bills and the impact they will have and compare them to the current situation.
If you are interested in FDA reform or access to clinical trial information I strongly encourage you to read this report.