FDA Launches Online Patient Network Emphasizing Treatment and Clinical Trial Discovery
The U.S. Food and Drug Administration officially launched its online Patient Network last week. The website is designed to centralize the information that patients normally come looking to fda.gov for, and also to give patients a way to interact with FDA members through Q&As and live chats.
The FDA has gone patient-centered, which is important because the kinds of patients who turn to the FDA aren’t all looking for general information on health and wellness. Many are there to initiate the complex process of finding an appropriate clinical trial or are there to discover potentially lifesaving drugs or therapies.
“We made sure that that information was really flushed out on the site because that is something that’s a regulatory process but it’s something that individual patients actually have to do themselves,” James Valentine, a program analyst at the FDA’s Office of Health and Constituent Affairs, said.
On the navigation bar at the top of the page are two buttons, “find out about clinical trails” and “find other treatment options.” Other treatment options include investigational drugs, something that patients who come to the site don’t initially realize are viable options. But Valentine thinks this section will end up being one of the most popular on the site because helping patients to find investigational drugs is one of the most common things the FDA currently does for them.
“They don’t always necessarily know that’s what they want from the FDA, but a lot of the time, patients who have contacted us are very frustrated, they’ve run out of options, and they just don’t know what else to do because they’re not allowed into clinical trials. And so we help them work with sponsors and their physicians to get access to investigational products,” he said.
That isn’t all that patients can use the site for, however. Patient Network includes educational tools that help users to learn the drug and medical device development process, and the FDA’s involvement in that timeline.
Valentine described the Office of Constituent Affairs as the FDA’s primary liaison to patients and patient advocates. The office has worked with FDA Commissioner Margaret Hamburg, MD, since 2009 to generate ideas about the site’s design and purpose. Valentine said that fda.gov was never written for a patient audience, so the development of Patient Network involved patients and patient advocates from the start.
Over time patients will have even more control over what goes up on the site. As questions come in, the FDA’s plan is to use those topics to guide the site’s development of content and features.