In a recent thought-provoking piece on the PLoS Medicine community blog, Paul Wicks, PhD, director of research and development at PatientsLikeMe, argues that open access science publishing is not only important for researchers, but is also critical for patients. He writes:
In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.
Opening up access to the full methodologies of these papers would help to educate patients even further and help them become critical evaluators of research – not just test subjects, but true participants in research.
Most concerning is the case where patients might be participants in a clinical trial for a new drug and still only get limited access the research results. These patients have sacrificed their time and, in some cases, their comfort, resources and even their safety to help other patients who will come after them. Like other empowered patients, they want to dissect the clinical trial protocols, understand the pre-clinical studies, and gain a balanced view of the pros and cons of a treatment that they hope is successful in clinical trials.
The full guest post is worth taking a moment to read. On a related note, a petition to the White House urging President Obama to implement open access policies for all federal agencies that fund scientific research has exceeded the number of required signatures. It will be interesting to see how the White House responds to the proposal.