My Impressions About the FDA Hearings on Social Media #FDASM

Social butterfly

“Promotion of Food and Drug Administration-Regulated Medical Products Using the Internet and Social Media”

That was the $10 name of the meetings held last week by the Food and Drug Administration in Washington, D.C. However, the hearings themselves were actually much more captivating than the name. Would it help if I tell you they were talking about Twittering, blogging, Googling, and forum-ing and how these internet venues intersect with health concerns like diagnosis of RA?

These were no boring FDA hearings

There were some raised eyebrows in my house as I listened attentively to the live feed all day Thursday.  “Now, that sounds interesting;” “Do you actually like listening to that?” But, I was undaunted with my speaker plugged in to my laptop, the volume turned up all the way.

Speakers at FDASM gave brief presentations that were anything but boring if you care about health blogging or searching for medical information online.  I just ate up stats like one-third of all Americans are looking online for health information.  And I loved this juicy tidbit: 40% of all women watching TV are on their laptops at the same time.

Who presented at FDASM?

We heard from the internet big guns like representatives of Yahoo, Google, Wikipedia, and WebMD. They were joined by representatives of internet marketing companies, the pharmaceutical industry, and healthcare communications folks.

Who was missing?

Bloggers were noticeably absent. I heard no e-patient speakers – I think that’s the official word for what I often call a professional patient or patient advocate, people who share the knowledge gained in their own journey on blogs like this one. Also missing were non-profit groups that you might expect to see.

However, Jack Barrette, CEO of WEGO Health, spoke about a survey they had conducted with their “health activists” – bloggers on their website. That was the closest thing to representing what we do here. Barrette gave a simple slideshow which summed up some of the feedback they received from their e-patient bloggers. Most of them seem to want “healthcare companies” / pharmaceutical companies to be more involved in providing information online, as long as there are rules for them to follow.

Some themes of the FDASM hearings

What’s the big deal? Here are a few threads which wound through much of FDASM presentations:

  1. Social media has become a very important tool for health. And people want pharmaceutical companies to participate, provide accurate information, and correct errors about their products.
  2. There is an enormous amount of misinformation on the internet regarding heath issues, much of it about pharmaceuticals – drugs and biologic medicines. However, the pharmaceutical industry does not currently have freedom to interact using social media under current FDA guidelines.
  3. Consumers have some distrust of the pharmaceutical industry, so they want transparency with the involvement of the pharmaceutical industry. There were suggestions that the FDA produce clear guidelines for pharmaceutical companies to show consumers their social media policies. For example, readers need to know whether a blog is sponsored or a forum moderator is paid and by whom.
  4. People want balance between benefit information about medicines and side effect / risk information. The risk information must be easy to access and readable.  Can you imagine how awkward that would be with micro-blogging like Twitter? Suggestions include a symbol or a hash tag to indicate location of safety information.
  5. PhRMA, which represents pharmaceutical companies, proposed a new FDA logo which would be placed on websites which meet FDA guidelines, such as balanced reporting of benefits and side effects and not promoting off-label uses of products.
  6. People also want the FDA to make it easier to understand how to report adverse events.

Post-game show

It will be several months before the FDA announces any new guidelines. I am hoping that during that time, blogger-patients – or e-patients or whatever we are – can make our voices heard. The FDA ought to hear that patients’ needs are the priority, with needs of physicians being a close second. I also hope they remember that the free speech of all individual Americans includes health bloggers. The FDA will take comments through February online at the Division of Dockets (docket #FDA-2009-N-0441).

Although I watched most of the hearings on my laptop, I was thankful for the reporting of a couple of bloggers who brought post-game analysis right away. Especially helpful: John Bell posted a videotaped overview of the hearings by attorney Tony DiResta. And Pixel and Pills did several straight forward videotaped interviews with the presenters for their blog.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

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