On Monday, National Public Radio’s Morning Edition ran a story (find it here) that talked about how People With Diabetes are connecting with others via social media. Kerri Sparling of Six Until Me was quoted, as were Dennis Urbaniak of Sanofi, Jeff Chester of the Center for Digital Democracy, and Jason Bronner of the UC San Diego Medical Center.
The piece talked a little about how Kerri connected with the online community; and it also talked about her endorsement deals, her disclosure of such on her site, and whether that’s appropriate. I think the appropriateness was raised with regard to drug companies and medical technology firms, and whether they have undue influence on the people they’re supporting. And whether they are disclosing that too.
So what’s my take on the story? Was it really fair? My feeling is yes.
I’m totally okay with the story and how it was told. I think the reporter, Lauren Silverman, was trying to shine a light on all sides of the issue. That’s what should be done. However, if I may, I’d like to focus on statements made by two people in the story.
First, there was the statement by Jeff Chester of the Center for Digital Democracy: “People do not read disclosures. The FDA and [Federal Trade Commission] need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies”.
Well, I do read disclosures. Maybe I’m in the minority here. But I’m interested in how someone describes their working relationship with a vendor. From what I’ve read from other bloggers so far, I have reason to believe that people are being honest when something they’re trying out is less than par, if indeed it is. Even if a drug company or medical technology firm is asking for (or hoping for) an endorsement.
That said, I certainly recognize the possibility for companies to try to overplay their hand in working with members of the DOC. I’m okay with the FDA or the Federal Trade Commission stepping in to set boundaries. But let’s not make a blanket statement that may lead people to believe that everyone’s on the take, okay? It’s more complicated than that, and so far, the bloggers and organizations that make up the DOC appear to be well behind the line of inappropriateness (wow, big words).
As far as advertising is concerned… well, we’re talking about blogs here. If you’re reading someone’s blog and you see a logo with a link to look at the latest Accu-Chek Nano® meter, you know that person or entity is being paid for it. I’m also skeptical enough to believe that people aren’t always in love with everything they’re being paid to advertise. Again, maybe I’m in the minority here, but I hope not.
The second statement I really have an issue with is this, from Jason Bronner, a doctor at the University of California San Diego Medical Center. He says: “There’s no proof in diabetes that social networking is helpful”.
I can’t speak for everyone. But I know that statement is absolutely false when it comes to my own experiences.
Through social networking, I’ve not only gotten the support that I’ve never, ever experienced in real life. I’ve also learned a great deal about products, new therapies, and yes, how to properly disclose a working relationship. I’m going to go out on a limb and say that I’m in the majority on this one.
Dr. Bronner does mention later that “We know a lot of patients are on the Internet. Patients are more likely to get information from the internet than they are from the doctor”.
Well, yeah… some of us only get a few minutes every three months with our doctors. We can get hours per day via social media. So instead of “leading a study that will help determine whether social networking can actually help patients manage diabetes”, and making statements like that before your study is complete … why aren’t you researching ways that doctors, diabetes educators, and other healthcare professionals can reach out to patients through social media and actually partner with them to help them achieve their goals?
Of course, if they did, they themselves might find a couple of juicy endorsement or advertising deals.
Which I hope they would properly disclose. #sarcasmintended