There is a very interesting article being circulated online, written by ‘NPR‘. The article entitled:
Social Media Help Diabetes Patients (And Drugmakers) Connect
begins by stating how the diabetes community is connected but quickly turns to the fact that pharma companies are getting involved with many of the bloggers and that involvement needs to be regulated, or guidelines better set by the FDA, according to advocate groups.
People living with diabetes have created a vibrant online community. Big drug companies are certainly taking notice — and some advocacy groups feel that the Food and Drug Administration should as well.
But there is a disconnect here which I believe the writer misses altogether. In as much as there are people out there claiming various ‘cures’ and ‘potions’ that will rid you of your diabetes (that should be vetted), taking all bloggers and stating that there should be a regulating body over them is a dangerous and slippery slope to be navigating.
My guess is that there are far more writers inspiring and connecting people than there are those specifically ‘on contract’ with a specific agenda. Those who blog in this community who write about subjects where they receive any sort of compensation are also very quick to also add that they receive that compensation from a particular company.
Bloggers are writers. Writers speak from experience to lend a voice of experience. In life; in diabetes; as a parent; as a person with diabetes; and yes to even state that they tried a product and it was great (or sucked for that matter).
The article quotes Jason Bonner who states:
“There’s no proof in diabetes that social networking is helpful,” says Jason Bronner, a doctor at the University of California San Diego Medical Center. He’s leading a study that will help determine whether social networking can actually help patients manage diabetes.
Now there are two different positions here—-social networking being helpful and social networking actually helping patients manage their diabetes. It might have helped if the writer wrote a longer article to clarify the difference and what might or might not need the influence of a federally governing body.
If it is all the same to the NPR writer, I may not consider a particular writer helping to better manage my children’s diabetes but I would be lost if I did not have some writers to clarify my sanity from time to time. Bloggers are bloggers…..I can differentiate the ones I want to be part of my life as credible and so can mostly everyone else.
I just think we need to be very careful trying to censor, or federally control, a world of writers that are crucial to those who live with diabetes every day, or are caretakers to the same.
This is a large community that is very intelligent and informative. To be honest, should someone write or say something that is bogus, untrue, or off the mark……believe me the diabetes community would be there before anyone else to correct and clarify any point made that was off-base. But I find it dangerous for someone to say to all writers, “You must stay within these parameters”.
How one differentiates between me reading about life and again about cinnamon curing diabetes……I am not too sure. But I think most of us know or would be quickly informed by others in the diabetes online community.
Perhaps the advocacy groups (the writer does not mention which ones) that thinks the FDA should be more involved may want to start with an easy one; why not start with asking the media to ‘get it right’ when it discusses diabetes.
I love the diabetes community. I also respect all of the great things the diabetes community accomplishes with the written word on blogs, FB, print media, or otherwise. DO we really want the FDA to set guidelines? Really?
I also do not believe anyone should just come out there and say what they want about a product or medicine……but what I know is this community will speak up very quickly when a line is crossed, but remember this; there are many lines. It would be dangerous and harmful to think any one agency could set one hard and fast rule across the board to govern; would anyone really want that?
I don’t, do you?
Thoughts?
I am a diabetesdad.
Disclaimer: I am a blogger; and love that I am.
9 replies on “Good-bye to Blogging as We Know It??? I Surely Hope Not.”
Tom,
I am pretty sure the FDA guidelines that the article refers to are not in connection with independent bloggers, but rather with how pharmaceutical companies like Sanofi (referenced in the piece) would be mandated to interact with the patient community via Social Media.
Thanks for your comment Manny and the point you make is understood, and I understood it as well. If we are discussing only those who are paid by the companies, I agree. That said, it is that independent voice that both the pharma companies want and others want to see mandated. If a blogger is free to write about anything, but when it comes to be specifics about a product or drug; limitations or guidelines restrict that independent voice; this is where I see the problem.
It is my belief that the guidlines and limitations will not only be given to the pharma companies; it will be given to those addressing any product or drug via the social media. It could not be one without the other. Could it?
Why would pharma allow that only they would have restrictions; is my point. The scope would be a wider net mandated…..in my opinion.
You’ve written some very good points — what the author seems to miss is the intent of many diabetes bloggers. In most cases, I would say that we DON’T do what we do to help people per-se, but to be a creative outlet that inspires discussions about our own lives and experiences with diabetes. That, in turn, does help others make educated decisions or to better deal with their emotions, and that is certainly a happy consequence.
If there is one thing that would worry me about corporations getting involved in the DOC is that it could suppress honesty. I’ve written about manufacturers corporations on by blog before, sometimes critically. I have no disclosures because I don’t get perks from anyone. That could certainly reduce MY chances of being sponsored by a corporation and earning free supplies or a stipend-for-work. If I knew such an opportunity presented itself, would I be as honest? It would be tempting not to be…
Thanks for your opinion Scott—much appreciated. I get the ‘influence’ aspect of those who write; and I think Ms. Sparling did a great job in what she stated (I believe she also needed to correct something the writer stated as well) but the writer needed to look at this and first define blogging and blogging corporately; blogging independently and paid blogging, if you are not going to differentiate them than the reader is left to surmise what is meant—-it is here where I would liked to have seen better clarification. I also believe that it is difficult to differentiate once ‘blanket guidelines’ are laid.
I listened to the story this morning. As the Mom of a T1 I am a heavy consumer in the DOC. I deeply value the information I obtain from fellow “boots on the ground”. My own experience reading DOC blogs is that authors freely disclose when writing about supplies given to them in return for their feedback. I do wonder if I will see a day where it gets difficult to distinguish between a legit blogger and a site specifically set up by a pharma corporation. The equivalent of what we see in print that looks like a news article except for the banner at the top that reads “This is an advertisment”. Is it possible that all the FDA wants to do is make sure that where appropriate, the reader can identify a paid advertisement? or compensated blog?
Lisa—thank you for your thoughtful words…..from the feedback I have received today; my conclusion is that we can hope that is what was meant; but it was an equal split if that was indeed the case. Food for thought, observation, and discussion for sure. We will all keep watch. And that is not a bad thing. Thanks again.
[…] this? Well, if you read the blog of Tom Karlya, the diabetesdad, you may have seen my comment on his post about the aforementioned NPR story. Even without disclosures, sometimes the mere presence of […]
Tom, I felt that the story was fair… it’s important to tell all sides of the story. That said, I didn’t much like hearing someone say that the FDA or FTC (Federal Trade Commission) should be involved, or that “there’s no proof in diabetes that social networking is helpful”.
My feeling is that DOC bloggers have been well behind the line of inappropriateness to this point. But diligence should be eternal. Who knows who will be writing tomorrow, and what they’ll be writing? That said, if there eventually are guidelines, I would like to see them uniformly imposed on healthcare professionals (many of whom don’t disclose their drug maker relationships with patients in real life), Big Pharma, medical device makers, and patients.
Stephen–
Yes, your points are good ones and others stated the same. Fair points. I too felt as you do and we will have to wait and see how all of this plays out. Thank you for taking the time to add to the discussion.