Pharmaceutical company web sites tend to have one thing in common: They almost never allow consumers to interact with each other or the company. That's a stark contrast to companies in every other consumer-oriented business, where brands are desperate to get consumers hooked on their bulletin boards, web-hosting services and social media apps.
Drug companies tend to believe that if consumers are given a voice on their sites, they'll start seeing posts containing adverse events. Adverse events have to be reported to the FDA, and plaintiffs' lawyers comb the FDA's adverse event databases looking for potential mass tort cases.
So pharma remains stuck in Web 1.0 world, where it's always 2002 and Facebook never happened (like this amusing old cover of Forbes). Except at Johnson & Johnson, which in March acquired ChildrenWithDiabetes.com, a web community for parents of kids with the type 1 version of the disease. What's interesting about the site is that it is a pure media venture. J&J is hoping to make money by selling advertising next to the content, which is generated largely by patients and their families on a series of message boards. I spoke to CWD chief Joe Natale, vp/new media, at the company. The site gets 10,000 uniques a day. (The interview was edited for flow.)
BNET: Why are so few drug companies engaging in social media or user-generated content? Joe Natale: It's a bit perplexing in my mind. I'm just surprised that more companies haven't widened their risk continuum and pursued this channel. [In terms of] online healthcare and the information that exists online, the volumes are unbelievable, it's overwhelming and yet the pharmaceutical industry has been very slow to adapt.
BNET: Why? Natale: There's a tremendous responsibility that a company has to shoulder when they get into this space, where there are going to say good things about you, bad things about you, there will be adverse events that take place, there's going to be off-label advocacy. These are things that make healthcare regulatory people extremely nervous.
BNET: How do you manage that? Natale: We had to protect what was important to the community and at the same time be responsible to the companies that support us. The best way to destroy that community would be to in any way hamper, or infringe upon, the way they create content or share information.
BNET: Some companies have tried allowing supervised input. GlaxoSmithKline moderates and approves comments on parts of its Alli blog, for instance. Natale: If every post for every user has to be reviewed and copy-cleared I will tell you not to waste your time because there's no way anyone in any community will wait 24 hours to see their comment go up.
BNET: How do you moderate CWD? Natale: You do have to moderate what's being said. You can't use profanity. You can't have sales reps on your network. We monitor through technology, we do it through moderation services and volunteers. It's not one approach.
BNET: Is all that monitoring expensive? How much is it? Natale: Yeah it is. It's an expense I don't think you can avoid if you're going to be in this space. It's $100,000 a year to $1 million a year depending on how much activity is on your site, depending on traffic. We're a medium-sized web site.
BNET: How did J&J come to buy this property? Natale: We acquired CWD in March of this year. It was driven by a rationale: We want to help families and support them and just be an advocate for type 1 diabetes. It's a 24/7 extremely invasive illness in which the patient and caregivers have to spend every minute thinking about it.
BNET: Most companies don't do this because they fear it will generate adverse event reports, which will be reported to the FDA, and then picked up by plaintiffs' lawyers. Natale: You can say 'it's just too dangerous for me, these are risks I don't want to take.' Many companies have done that. Or you can say this is not going to go away, this is not a fad. It's only going to grow. We've got to rethink everything we know, or we think we know, and we started from scratch.
BNET: What happens if someone posts something that looks like an adverse event on CWD? Natale: It will be picked up. Let's say they have a medical device that fails. 'My 8-year-old's device has failed I don't know what to do.' Within moments our moderator will pick up on that. Let's say it was an insulin pump. We contact the insulin pump company to share with them all the details we have. From that point on they just follow their own protocols. We can only share what we have. The text and the post and the product name.
BNET: How many adverse events do you get on the site? Natale: It's much less than you would think.
BNET: What other risky stuff might people do on your site? Natale: Let's say someone tampered with the device and they tampered with it because they were told it would help them. Our moderators will intervene. We immediately notify the community that things like tampering with a medical device is a terrible idea. We'll then follow up, and then through our moderators help teach the poster what they should do or what they should avoid doing. You just can't pull down posts because someone says something that scares you. We keep the original post up. Our intent is to keep it out there and use it as an example. If you just pull it down blindly no one learns anything. By the time you [as a user] learn about Children With Diabetes and get to our website, you're in a pretty unique situation. You have very little time to go out there and spam. Your time is valuable and the content is extremely relevant. We don't get a lot of people acting irresponsibly on our site. These people are savvy. They know about the disease state. They know how to care for their children. They want to share and author healthcare content. Bad behavior is very unusual.
BNET: You make it sound like there are hardly any business risks. Natale: There are enormous risks. I don't want to send the wrong message. It's extremely intimidating but the fact is you've got to reveal how you commit and honor your responsibility to your company and your patients. And you have to test whether or not you feel you can operate and still comply with the integrity you stand for. A lot companies will look at this and say, 'I just don't think I can be as responsible as I need to be.' Some companies will say 'it will cost us money, cost us some investments,' but I think it will be worth it.
BNET: Do any other J&J companies do this? Natale: There aren't other J&J companies that do this.
BNET: Have you had any contact with the FDA about this? Natale: We have not had any direct interaction with the FDA. I'm sure the FDA is, as we speak, evaluating the social networking space. [The FDA does not have] a robust dictionary or guide for this. You have to focus on your ethics and the integrity of your company.
BNET: I hear that brand managers who want to do this kind of thing get rejected by their internal lawyers and regulatory groups a lot. Natale: Most of them have been frustrated, unable to convince their management or secure support. They're trying to figure out how they can do it.
BNET: CWD is essentially an online media play. Do you let competing companies advertise on it? Natale: Companies that compete against J&J can advertise. We're an insulated unit, unbiased and objective. If we were only talking about J&J products we would only be giving them a fraction of what they need.
BNET: Are you profitable? Natale: The role we play in our franchise is to be a profitable unit. We've retained all our advertisers [from before the acquisition]. From our sponsors and advertisers there was some concern upfront, no doubt about that, but we've honored our commitment. We're a single independent, insulated business unit. We just acquired a site in Madrid, Spain. Just like our company, it was started by a father whose daughter had diabetes. Our intent now is to continue to grow globally and utilize networks in each one of these regions.