A Patient’s Perspective on Day 1 of the FDA Public Hearing on Social Media

November 12th, 2009 by DCPatient Leave a reply »

First and foremost, thank you HealthCentral, for hosting the afterparty. I admit, though, that this is the 1st time I’ve left a great cocktail party to go blog.

Overall Impression: Very well done and informative.  Presentations were thoughtful and most included data.  Too many PR agencies battling to promote their digital agencies and have the sexiest graphic explaining the extent of pharmaceutical responsibility. Companies with thinly veiled “please don’t kill my business model” presentations advocating to preserve sponsored links. Consistent results from research on patient and physicians Internet usage was reassuring.  Commonsense consensus across presentations on regulated entity accountability for content in proportion to the extent of their control.

Best Presentation: WEGO Health

Just when I had given up on  hearing the patient’s viewpoint, WEGO Health gave us the actual words of health activists (top 10% of engaged patients who create and interact with content and fellow patients across multiple platforms).  WeGO Health activists welcome pharmaceutical company participation in social media (as do I) IF companies bring value to the table.  90% think that companiesalso have a responsibility to correct misinformation about their branded products and yet realize that it is impossible to monitor all mentions on the Internet. Regulation of the pharmaceutical and device industries should not come at the cost of participation.  The full survey can be requested at http://www.wegohealth.com/socialmediasurvey.

Best Presentation Title: Envision Solutions “Health Searchers: Blind, Irritated, & Impatient”

Scariest Presentation: VuMedi

VuMedi creates communities for the 80-85% of surgeons (he used orthopods as an example) who perform the majority of surgery types only once or twice a year a way to learn the surgery the night before the scheduled procedure or exchange comments with higher volume proceduralists.

Worst Presentation: National Research Center for Women & Families

I have a great deal of respect for this organization and so I was so disappointed by their call for the FDA to issue more regulation and more severe penalties for pharmaceutical interactions on the Internet, completely out of step with the flexibility that almost all others outlined.  The presentation also reflected a great paranoia about potentially ghostwritten content (“I don’t know who’s paying for this content” —  take 10 seconds to google and look for the company name in the corner or do 1-click.) and Wikipedia. (Really, is the FDA supposed to do something about Wikipedia?)

Most Intriguing Solution: FDA seal of approval symbol for credible sites (PhRMA and others)

Interesting Factoids:

  • 83% of Internet users searched for health information (Pew Internet survey)
  • 13% of hospitals use social media (Acsys Interactive)
  • 78% of condition sufferers go online (comScore)
  • 36% of consumers who view online product information then go seek a physician (Google)
  • 27% of consumers who view online product information change their behavior (Google)
  • 4.6 Billion (with a B) searches on health keywords in the US in last 3 months of 2007 ( Google)

Key Takeaways:

  1. Social media should be important to FDA and Pharma because it is important to patients and physicians.
  2. Patients welcome pharma and device participation in social media if they lead with value not branded message.  Patients first!
  3. Regulated entities should be held accountable for content in proportion to their control whether on their own  or 3rd party sites but their responsibility for independent content and content changed by independent entities should be limited or none.
  4. Full prescribing information with risk and benefit should not be more than 1 click away from branded product related commentary on pharma-controlled or collaborative sites.  Amount and proximity of fair balance information should reflect audience and potential space limitations of medium.

Full information about the FDA meeting can be found at http://bit.ly/29eHnf

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