Why Health Activists Should Care about FDA Regulations of Social Media

With every challenge lies unique opportunity. As we know, FDA Regulations of Social Media are delayed indefinitely – but instead of waiting patiently with our hands folded, let’s do something!

While we wait for the FDA to draft regulations, there are ways Health Activists can open communication with healthcare companies and not only lead the way but also encourage their participation and engagement! Because, as Ellen put it so well,

“Companies are largely missing from the supportive, real-life conversations going on in health discussion groups, on social networks, and such…  I’ve been at this long enough to know they have regulations that get in the way, but everyone would benefit if [companies] could be at the table with us…” –Ellen

In our new white paper, Social Media Won’t Wait, there are key ways that Health Activists and empowered patients can build upon their use of social media to actually influence the big companies.


Here is a list of things you can do right now:

1.) Learn what regulatory barriers prevent company participation and help advocate for new regulation.

2.) Health Activists and companies need to understand different types of Facebook presence and find ways they can stand out from the pack.

As Manny says, “Why Facebook?  To go where people are natively… But the signal-to-noise ratio is a tricky element; so many people ‘broadcasting’ (putting company Facebook pages and people at the same level) that it’s hard for people to tune in and sometimes easy to tune out.”


3.) Ask out loud in your communities for company participation.

As Lisa Emrich says, “The Companies MUST NOT use the fear of FDA regulations to excuse their nonparticipation online.” Invite them to jump in. Reach out when you can.


4.) When companies do interact – recognize this and respond!


5.) Be receptive to online participation by healthcare companies and help them interact even better. Be on the lookout for companies that, like Debra says, “…hire people for that purpose. It’s important, it’s just important.” Greet these participants.


6.) If you, like some Health Activists, expect companies to make corrections and add accurate product information, you should post positive support for these contributions when companies make them.


7.) Support companies who make an effort to engage with you in the absence of FDA guidance.

Provide what Jenna offers, “It may be difficult for health care companies to tap into this unique relationship but the health care companies who find a way will see the reward of a happy and loyal patient consumer.”


8.) Offer comments about that FDA process. Show you acknowledge it is a challenge and provide positive reinforcement and tips for how companies can continue interacting.


9.) Stick together. Health Activists who engage with other Health Activists and promote best practices in their communities will have the most influence.


10) Continue leading by example. Your use of social media to provide correct information and honest anecdotal evidence and combat misinformation proves that healthcare companies can get involved and make an impact even without the guidance.


Check out the whole white paper here to see what we think healthcare companies need to do now – and bring this information back to your companies to share what we can do right now to make a difference!


3 thoughts on “Why Health Activists Should Care about FDA Regulations of Social Media

  1. I have noticed the Pharma companies becoming more active in social media. They are still very cautious though. They are sharing some info on places like facebook and twitter.

  2. FDA Blogger says:

    The FDA has certainly been slow to enter the realm of social media.

    Still, as slow as that process may be, the relationship between the FDA and social media is always evolving. For those interested, here’s a related article on what the future may bring for the relationship between social media and the FDA. It’s split into four parts, and may provide a deeper understanding of the issue at hand.

    ://goo.gl/EBMMK (with ‘http’ in front)

Comments are closed.

Share via
Send this to a friend