Comment »Posted on Thursday 11 December 2008 at 3:13 pm by Jacob Aron
In Getting It Right

Much of the discussion on the Science Communication course is on how the public should communicate with science, and not just vice versa. Scientists should listen to the public, as well as speak to them. It’s a simple point, but one that is often missed.

The reason I bring it up is this story about the publication of clinical trials results. Every year, an estimated 2.3 million people in the United States volunteer to be a part of clinical trials, but once the trials are over and the results are determined, participants often don’t get to hear about them. Rather, they are squirrelled away in an inaccessible journal, unavailable to the public. Potentially, this could leave people without important health information that they actually helped gather – understandably, patients feel like they aren’t being listened to.

Currently, medical researchers in America are only required to inform participants in medical trials if new information is discovered that might make them change their mind about being part of the study – a dangerous reaction to a drug, for example. A new report from the University of Rochester Medical Center has suggested a way that both patients and researchers can be happy. The author, Ray Dorsey, M.D., strongly believes that this information should be shared:

“Individuals who volunteer to participate in clinical research frequently expose themselves to risks, both known and unknown,

“Because of their participation, they should be informed of the results of these studies in a timely and personalized manner.”

In his paper he details an attempt to communicate the results of a clinical trial for an experimental drug (ethyl-EPA) for Huntington’s disease. The goal was to let people know the results within 48 hours of the official release. Information was posted on the study’s website, as well as sent via email to members of the Huntington’s disease community. Participants in the trial were also telephoned directly, and the study’s principal investigator Ira Shoulson, M.D. held a conference call for interested parties, summarising the results and answering questions.

After this communication, participants were surveyed for the report. It turns out that 56% heard about the result with in 48 hours, with most (73%) getting their information from the telephone call. They also reported a high level of satisfaction with the communication afforded to them, and had developed a strong understanding of the drugs benefits and risks.

In other words, great news. It’s only fair that participants in a trial for a drug that could potentially change their lives get to know about the outcome, and it really can’t be too much of a drain on resources for the scientists. Keeping people happy will also only serve to increase participation in trials, so it’s a win-win situation.


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