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Person-Centered HealthCare: The FDA Gets Patient-Centric

3 Mins read

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The FDA just recently launched their Patient Network Site and initiative to get patients, patient advocates and patient communities more involved in what the FDA is doing.  The new website aims to bring patients to the forefront, make FDA regulations clear to everyone and invite involvement from the public.

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The FDA just recently launched their Patient Network Site and initiative to get patients, patient advocates and patient communities more involved in what the FDA is doing.  The new website aims to bring patients to the forefront, make FDA regulations clear to everyone and invite involvement from the public.

A key person in the creation and development of the new FDA website is James Valentine, Patient Liaison in FDA’s Office of Health and Constituent Affairs within the agency’s Office of External Affairs. The Office of Health and Constituent Affairs is the agency’s primary patient liaison and patient advocacy office within the agency.

When I asked James Valentine how the Patient Network Site got started, he explained,
 
“We knew from experience working with patients that the current FDA.gov website was not organized or written in plain language for the patients, which is why it was that much more important to make sure we knew what resources to focus on and what types of tools they’d like to see.”

 

If you take a look at the website and compare it to FDA.gov  for instance, you will see that it is much more clear and easy to understand and navigate.  It is uncluttered and user-friendly offering options like “Get Informed”,  “Talk to FDA” and “Take Action”.  You can click on “Approved Drugs at FDA”, “Find a Clinical Trial” and “Ask the FDA”.  You can “Get Disease Information”, “Learn About the New Website”, or “Comment on a Regulation”.

FDA Patient Network Website: Get Informed. Get Involved.

The FDA clearly wants to involve patients more in the regulatory process.  A page of the website is dedicated to becoming a “patient representative” and serving on advisory committees, acting as a patient consultant and taking part in FDA meetings and workshops on regulatory and disease issues.

In a recent interview, James Valentine explained the FDA’s mission in creating this site.  

We really wanted to provide a resource for any patient or patient advocate that is at all interested in FDA-regulated medical products or issues to have a home for getting educated about these products, how they’re regulated and how they can be a part of that regulatory process.

So I guess we knew that some patients will only come to the site to get some information, but we hope that other patients will actually become advocates for their patient community and that it will allow them to provide FDA with their unique patient perspective, allowing us to make better-informed decisions with that perspective. That’s kind of our goal for the site.Image

The FDA also invited the public to a Patient Network Town Hall Live Chat with the Office of Health and Constituent Affairs Staff.  The chat allowed patients and patient advocates to discuss the FDA’s  strategy for including patient perspective into regulatory decision-making.  The chat was one more way to invite broader patient participation and engagement. 

After looking over the patient network site and clicking on various options, reading some other posts and articles about the new site, I feel that the FDA is certainly succeeding in their mission.  They seem a lot more friendly, somehow….  more like a helpful patient-centered support mechanism rather than a distant and rather austere regulatory entity. 

When asked in the previously mentioned interview what interesting comment he could make on the website development process, James Valentine said,

The most interesting part to me is the transition of FDA being entirely a regulatory agency to a public health agency with a public mission. I think this patient network is at the core of that public health mission. We’re trying to improve the public’s health, and I truly believe that patient input will allow us to make better-informed decisions, and ultimately better decisions, that better meet the needs of the patient community and improve the public health.”

And when i asked James what his next move was, he concluded,

The FDA is committed to meeting the needs of patients, consumers and other users of the Web site. To do so, the agency will strive to continually improve and enhance the Patient Network Web site with new features, tools and information.

 

And now watch this video for more information on the Patient Network Website:

 

If you like this post, please read other posts in the series on the Person-Centered HealthCare main page. And if you have a story to tell that may be a fit with our series, please comment below or email me at joan@socialmediatoday.com


 

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