New website allows FDA to more easily connect with and inform patients

April 30, 2013 – Development of the FDA Patient Network began in 2010 by the Office of Health and Constituent Affairs.

The U.S. Food and Drug Administration’s (FDA’s) new Patient Network website hopes to open new channels of communication to help patients, patient advocates, and their health professionals more easily connect with the FDA. The website functions as an interactive tool to educate visitors about how drugs and devices are developed and regulated. Understanding the patients’ perspective is vital to the FDA’s mission, and when patients better understand how drugs and devices are studied, reviewed, assessed, and brought to market, they can provide more focused and valuable input into this process.

Development of the FDA Patient Network began in 2010 by the Office of Health and Constituent Affairs (OHCA). Through this network, the FDA not only shares information with the public, but it also recruits patient advocates to help with key decisions and to act as patient representatives in FDA advisory meetings. The new website is specifically designed to present complex technical information in a way that is clear to a patient audience. Via this channel, patient advocates can more easily connect to FDA regulators via open meetings, live chats, email, and webinars.

James Valentine, FDA Patient Network program manager, explained that the agency was careful to solicit patient input in each phase of the website-development process. Every aspect, from the design to the content, is specially tailored to engage patients and patient advocates, and to encourage their participation in the medical product regulatory processes.

“We want this site to continue to be adaptive to the needs of the patients, so as we get input from users, we will continue to edit, expand, and improve our offerings,” said Valentine. “By using a web platform we are making this content more accessible and universally available so that patients can walk through the steps of drug and device development at their own pace.”

According to Bray Patrick-Lake, director of stakeholder engagement for the Clinical Trials Transformation Initiative and a patient representative at FDA, this new website helps to eliminate some of the perceived mystery surrounding FDA regulatory practices and offers patients a way to get directly involved. Patrick-Lake, who acts as a patient advocate in a video for the Patient Network, said that while the parent FDA.gov website contains a lot of detailed information, it is highly technical and can be confusing and non-engaging to patients. The new website, however, is specifically designed to bridge the gap between FDA practices and patient needs and provide for bidirectional flow of information between the agency and the patient constituency.

Read more about the program on FDA Commissioner Margaret Hamburg’s blog.

To contact the FDA’s Patient Network, email PatientNetwork@fda.hhs.gov

Check out Patrick-Lake and Valentine in the new commercial for the FDA Patient Network.