Posted 04 December 2013
By Alexander Gaffney, RF News Editor
The sheer volume of news and information sources regulatory professionals need to stay abreast of can be daunting at best. Here at Focus, we track thousands of websites and social media accounts to bring you daily snapshots of the news that matters most to regulatory professionals.
But there's another source of information out there that can prove valuable in its own way, one widely neglected by the life science and regulatory communities.
Over the last few years, one website has managed to work its way into the news time and again, illustrating its power to start conversations, influence opinions and share breaking news information. It's called Reddit, and it's a website that claims to be-and likely is-"The Front Page of the Internet."
The site, which allows anyone to start their own sub-community or "subreddit," has burgeoned in visitors in recent years.
The Power of Reddit for Regulatory
But for regulatory professionals, it's also a potential source of information and analysis.
Take, for example, the enormous number of subreddits focused on specific diseases, and especially rare diseases. There's a subreddit for multiple sclerosis, which currently features rants about Tecfidera and Tysarbi. Or head over to the cystic fibrosis subreddit to see a post exalting the benefits of the Tobi Podhaler and a new clinical trial in Australia for Kalydeco.
Even lesser-known diseases have their own subreddits, not all of which are as simply named-"r/Trichsters" for patients with trichotillomania, for example.
But then there are Reddit's less predictable discussion. Observe this 2013 post in Reddit's famous "Ask me Anything" (AMA) forum:
My name is Joseph Suchanek and I have an extremely rare disease that only 800 people in the world have called Fibrodysplasia Ossificans Progressiva or FOP or "Stone Man's Disease" where my muscles and tendons turn into bone. AMA
The discussion, which became one of the most-read on the day it was posted, provided an inside glimpse of a patient and their day-to-day activities.
And every conversation, even unrelated ones, can offer an opportunity for someone to weigh in on regulatory topics. A discussion about red tape in government might elicit a response from a patient looking to obtain access to a drug on compassionate use grounds. A question about medical problems could lead to a horror story about a defective hip implant.
And, as Bayer found out this week, even seemingly harmless forums like Reddit's "Today I Learned" (TIL) can lead to massive exposure of long-past regulatory fiascos.
And there are ample examples of users who have used their anonymity to lash out at companies about the safety of their products and even adverse events that they have experienced.
All of which is to say Reddit, with its millions of daily visitors, is a source of information worth paying attention to, if only for defensive purposes. The manufacturer of this product, featured on Reddit earlier this year, might have wished they saw the problem themselves before FDA was made aware of the problem.
Keeping Track of Regulatory Information
So how does someone track posts on the website? It's easier than you think.
The invaluable website Metareddit hosts a tool that allows a user to set up keywords to monitor, which are then able to be pushed out via RSS feed.
For example, Focus keeps track of various keywords like "pharmaceutical," "Food and Drug Administration," "FDA," and "medical device." If you oversee a particular disease area or drug, you might also wish to subscribe to those specific keywords (e.g. "cystic fibrosis") and bookmark the disease-specific subreddit if it exists.
While some applications might be obvious, it could also be a good way of keeping tabs on the side effects a patient is experiencing in a clinical trial (such as a competitor's). Just be aware of the regulatory consequences if FDA finds out you're un-blinding your own trial or engaging in off-label marketing to a disease group.
And for those who use the forum regularly, there are also regulatory-specific forums, including r/Drugs_and_Devices, which the editors of Regulatory Focus moderate. We'd invite you to stop by.
MetaReddit's Monitor Tool