National Public Radio ran a story today on Morning Edition about how social media has brought diabetics together into helpful communities (GO TU!!!) It ALSO addressed how our discussions (but more those bloggers the drug companies pay) have influenced care. Take a look:
Not MY DOC and actually a little creepy imho.
It doesn't say anything about informational websites such as dlife or about online communities like TuD (which to me are what the DOC is all about). Instead it talks about blogs which are, imho narcisstic monologues, not dialogues like we have there. Then it goes on to admit these bloggers including one very popular one are paid by drug companies Ewwww. When we encounter someone like that on here we tend to call it SPAM and report them!
I am actually a regular reader of SixUntilMe and love that blog. The fact that Kerri receives endorsements doesn't bother me at all. I don't think that her writings are terribly influenced by the endorsements she receives. She and other bloggers are always very careful to say when they had trips or supplies paid for by a certain company.
Blogs, to me, offer a more detailed perspective of the personal experience of living with diabetes, which is why I like them. I like forums like this too; blogs just have a different feel to them that I like.
And keep in mind that this site is also monitored by drug and manufacturing companies. It is not some private little niche that only D folks have access to. Personally, I think that has worked to our advantage and has resulted in product changes that we want to see. Yes, in the end these companies are looking to make money off us, but I am OK with this so long as they're delivering a product that benefits me.
I agree that the article doesn't really get into what I'd consider the best part of online communities which, like Zoe, I feel are message boards. I got started using message boards looking for information about guitar amps and then fantasy baseball. There's all sorts of blogs that will offer opinions like "Marshall Roxx" or "Starlin Castro is the best SS in the NL..." but message boards allow a dialogue to happen.
I think that the dialogue is the critical component forming an online "community" and I participated in the ADA forums and then moved here and lso hve dabbled at Diabetes Daily a little bit, although the pace seems a bit slower. Diabetes seems to me to be a more complicated disease to manage because there are so many inputs, causes, effects, challenges. Many diseases are horrible and challenging but only diabetes gives us, the patients, the degree of control over our results. I don't think there's too many other diseases that provide the same level of feedback.
Where the guy says "getting involved in social media is a critical component of serving the diabetes community" but I don't see a lot of Medtronic or OmniPod reps (although I have seen a few?) posting in threads on message boards. To me, the blog scene seems sort of stilted as there's not a ton of dialogue. Lots of "I love your blog" and, while I like the stories, there doesn't seem to be a huge amount of dialogue between the bloggers and their followers, at least compared to the amount of dialogue we get here at Tu. I've also started hanging out w/ more of my diabetes acquaintances on FB, which is interesting and Twitter a little bit. I like FB ok but don't see a huge amount of questions being answered either. On FB and blogs, people recount "morning disaster, 250BG" or "99, yay" and get a bunch of *likes* but, on a message board, people seem more readily able to say "what did you eat before you went to bed before the 250?" "how are your basals looking?" or "what did you do to get the 99?" and get a conversation going. The dialogue is the best thing about forums and, in my exploration, Tu seems to have a very strong and motivated community that I've enjoyed a great deal. I think message boards offer the best opportunity to achieve meaningful contact.
I know for a fact that Minimed reps monitor this site. And I am sure other companies do as well. Again, as I state above, I am ok with that because it works to our advantage to have people actually listening to folks who use these devices. I love my Minimed pump but regularly post about what I feel are its weaknesses BECAUSE I want Minimed to know which improvements I want to see in the next generation of pumps. This is important to me.
Yes, there is a part of "big pharma" that is evil, but since we need these companies to stay alive, we might as well try to work with them. At the same time, we need to encourage competition.
Also, I DO NOT see social media as being just blogs. I see it as forums, blogs, Twitter, FB, etc.
I agree with all of you! What I found interesting was the first part--getting Type 1 and not knowing anyone else with it. She had to go to diabetes camp to find out that she was not the only child with the disease. I remember that, feeling very alone with Type 1. It was many years--nearly 30--after my diagnosis before I actually met another Type 1.
I also think that some of the drug companies monitor, and I have actaully sent links to discussions to their reps. I think they should know how we feel and where we see problems. I remember a huge discussion about customer service at Mini Med and I sent that link--they need to know this stuff.
But I am also sure my surly endo does not feel any need to read about our travails......
Perhaps if I change my name to BudSelect55AcidRock23, I will attract other sponsors, like in NASCAR?
I joined this blog because I am a long term T1 and found the info. here tremendously helpful. When I applied to join, I stated that I was a contractor working at a pharmaceutical company with diabetes products. I am not speaking at all for that company. I just want to present my view as some context to the reactions in this thread.
When i first started working for that company, their contact with patients was mostly through 1) market research or 2) education. By education, they meant that their "smart" people figured out what T1's and T2's needed to know and they were going to tell them that no matter what. A distorted internal tradition led the marketing group to believe that they should advertise but not have a conversation with patients. This was driven by a fear that patients would say bad things about the company (which they do and which is sometimes justified)or reveal issues with their therapy (which the company is required to the FDA very quickly).
In traditional pharma marketing research, someone has an idea, then spends a couple of hundred thousand dollars asking recruited participants specific, approved, questions on that topic. It takes months from start to finish. It has its place. But if you want to find out what real people really need or really want rather than what they think about the idea - it doesn't work so well.
If you want to find out the real ways to help, conversations are so much better. And TuDiabetes is a place for conversations. It has rules and the company I contract with has rules (especially about transparency) to make sure the privilege is not misused.
If I stared to tell you some of the goodness we have learned in conversations, I would probably cross the line and begin "promoting" so I'll stop here.
Please give the DOC bloggers and writers the benefit of the doubt. I understand skepticism about big pharma and it has to prove that it can be a responsible member of the DOC. I am sure, in at least one case, that they are trying.
Thanks for your input,beechbeard. It sounds like, both as a Type 1 and as a member of the DOC, your employer is willing to listen to your input. Glad to hear it!
Manny is asking #DOC folks on Twitter to please read and sign this letter to NPR
Requested my name be added to the NPR letter. For those like me not on Twitter, you can send your name (& link) to firstname.lastname@example.org.