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Diabetic Integrity.

July 28, 2009

For a long time, I didn’t think patient bloggers had much in common with other bloggers, like mommybloggers, fashion bloggers and tech bloggers.

But we do.

Bloggers – as a whole – are now undeniably a source of influence for a great number of people, many of whom gain their information regarding current events, pop culture and consumer products from the Internet. For mommybloggers and others who write about products, there is a firm hand coming down on them declaring that they are running the risk of actually losing their influence? Why? Because these bloggers are receiving products for free and not disclosing this fact, only blogging about products that they enjoy, or are being sponsored by companies to attend conferences and hawk products at their unsuspecting colleagues. Bloggers who have built their audience around the flow of products coming to their site are now demanding not just more product, but better, more expensive product. And what do they do when they don’t get what they want? They blackmail.

Now, I have never seen anyone in the diabetes blogosphere blackmail anyone but we have become more entrenched into the world of marketing schemes than ever before. First, it was the usual blog advertisements. Those are pretty harmless. They’re off to the side, they’re usually easy to ignore and it’s clear that bloggers are using them to get money, and not actually endorsing any of the advertisements. Then we started getting free products. Most of the time, it’s books or cute, hand-made glucose meter cases. Sometimes it’s a meter or a lancet that a company wants us to try out and tell people what we think of it (hopefully good things).

And now, the creme de la creme, the big cheese, the top dog, the big kahuna of marketing schemes is… the Blogger Meeting. As far as I’m concerned (me being a social media marketer), this is hardly new and unusual. PepsiCo’s done it. Walmart’s done it. Ford’s done it. Disney’s done. Even Johnson & Johnson did it, although they did it with moms, not patients (Johnson & Johnson being an ubercongolomerate). But now Roche did it. They did it with us. They brought a group of “influential” bloggers to a conference room in Indianapolis (whoa baby!) and they listened to us talk. And talk and talk and talk.

This for which we are being criticized on blogs and on Twitter. I’m not going to link out because I don’t want to shame anyone, but YOU KNOW WHO YOU ARE. Anyway. There appears to be two questions, and I want to address each of them here. The questions are:

1) Why the hell wasn’t I invited?

and

2) Oh, so ya’ll are Roche whores now, aren’t ya?

Answer #1: I don’t know why you weren’t invited. I wasn’t in charge of picking and choosing who went and who didn’t. But I will tell you this: we could not have fit everyone who wanted to go. SOMEONE was going to be left out, hurt and bitter. There simply wasn’t enough time or room to fit everyone who probably deserved to go. Trust me, there were people whom I thought should go. My hope is that this isn’t an end, but a beginning. That Roche (via Amy and Manny) chose, or at least guided, the decision of who should come based on our unique perspectives and as a way to begin the process of working with bloggers. If this is the end of the road for Roche, after one meeting with thirty bloggers, well shame on them.

Answer #2: OH COME ON.

First, I have to say that anyone who thinks we’re going to suddenly shill out for a pharmaceutical because they flew us to INDIANAPOLIS for LESS THAN 24 HOURS has another thing coming. We did not sign a pledge saying we are going to become the drones of Roche. Do you really honestly believe that after one meeting with some marketing representatives that we are suddenly the Children of Roche? Do you have so little faith in our integrity?

There is a new movement on the Internet called Blog With Integrity. It was founded by four women, three of whom are work colleagues of mine (Susan Getgood, Liz Gumbinner and Kristen Chase). This is what the website states:

By displaying the Blog with Integrity badge or signing the pledge, I assert that the trust of my readers and the blogging community is important to me.

I treat others respectfully, attacking ideas and not people. I also welcome respectful disagreement with my own ideas.

I believe in intellectual property rights, providing links, citing sources, and crediting inspiration where appropriate.

I disclose my material relationships, policies and business practices. My readers will know the difference between editorial, advertorial, and advertising, should I choose to have it. If I do sponsored or paid posts, they are clearly marked.

When collaborating with marketers and PR professionals, I handle myself professionally and abide by basic journalistic standards.

I always present my honest opinions to the best of my ability.

I own my words. Even if I occasionally have to eat them.

The reason I wanted to point this out to everyone is because I feel that it is time for all of us to join together with our bloggy brothers and sisters to say that we are responsible for the integrity of our blog, that we are responsible for the truth in our words, and that we are responsible for the relationships and partnerships we choose to engage in.

My belief is that we will always be intricately connected with pharmaceutical companies, big or small, Roche or Agamatrix. Pharmaceutical companies, whether we hate them or just simply loathe their very existence, are responsible for many of the things we take for granted. They make Children with Diabetes conferences possible. They pay the advertisements that keep Diabetes Health and Diabetic Living afloat. They financially support the first diabetes support group I ever went to in Portland, Oregon. They will most likely be funding, in part, the new diabetes meet-up I am currently planning. They may be getting in front of us with their pretty pictures and fancy demonstrations, but we’re getting something out of the deal too. Don’t forget that.

Yes, diabetes pharmas make money off my illness. But you know what? I’d be dead without them. And even if I was still alive, I’d probably be pretty lonely and uneducated.

Roche Pharmaceuticals did not ask me to write a damn thing when I left. Perhaps they will start sending me press releases, but I have integrity. I can and will choose whether or not I feel their announcements are appropriate for my audience. If I don’t, I won’t say anything and maybe I’ll make fun of them. If I like it, maybe you’ll hear about it. If they send me a product and I review it, I’ll let you know that they sent it to me. If I review another product that I purchased myself, I’ll make sure to tell you that too.

Roche Pharmaceuticals paid for my flight, my hotel, my cab fare and my food while I was in Indianapolis. It was a nice hotel and the dinner was pretty decent. Roche wanted to hear my thoughts about social media, and as someone who has grown up in social media, I am more than happy to tell them how not to fuck up. I don’t want that. Mostly because if they mess up, we’ll have to suffer with their incompetence, and really, who wants that? If Roche wants me to share more of my thoughts, then yes, they will have to pay me for my consultations. Why? Because I am valuable. We are valuable. I don’t care if it was Agamatrix in New Hampshire, Novo Nordisk in Denmark or Lifescan in Milpitas, California, my time is valuable. I took time away from my job (I gave up two vacation days to go to the conference), time away from Erik, and time away from my life. And for those with children, they took time away from their children with the hope of helping you. My time costs money and I had better be compensated for assisting a company in improving their products and services.

But I am not a blog whore. I cannot be bought. My thoughts and ideas cannot be purchased. I have the integrity to draw a line between consulting in an area I am experienced in, and saying something to you that I do not believe in.

I signed the pledge.

I have integrity in purpose, commitment and content.

Do you?

21 Comments
  1. July 28, 2009 4:24 PM

    Great post! …I like the idea of the badge…

    • July 28, 2009 4:40 PM

      Yes, I love it too! I think everyone (who deserves it) should sign up.

  2. July 28, 2009 4:32 PM

    Dear Blog Whore,

    I love you.
    ❤ Hannah

    • July 28, 2009 4:39 PM

      Dear Hannah,

      I love to you too.
      ❤ The Blog Whore

      • July 28, 2009 8:55 PM

        What about the Patient Blogger Code of Ethics? Isn’t that something more of us could make use of? I don’t have it, but I think I might like to…especially if some opportunity would come up for me in the future for which I could otherwise be criticized!

        • July 28, 2009 10:20 PM

          I think of the Patient Blogger code of Ethics as something more akin to speaking truth about medical issues and stating what your own personal experience is (perspective, disclosure, reliability, etc.). I am approved for that, as you can see from the side bar. Blogging with Integrity is all encompasing, focusing not just on the products, but also on relationships with the companies who make them. Blogging with Integrity also does not have an approval process, so it’s easier for people to jump on board with it.

  3. July 28, 2009 4:35 PM

    Great Post!

  4. July 28, 2009 4:44 PM

    Bravo and well said🙂

  5. July 28, 2009 4:48 PM

    Very well said, Allison.

    While me and you have differing opinions on many things, we both have one major defining thing in common: To help people with diabetes–Through a variety of ways.

    I visited some of those blogs you referred to, and in some instances tried to defend the summit and the individuals who attended; but I have quickly realized I am just falling into their trap of “look at me! look at me!”. They are not worth the trouble, and I admire the fact you opted to not fuel there agenda by linking to them

    ct

  6. July 28, 2009 4:54 PM

    You are to be praised for stating the TRUTH! Those of you who were lucky enough to be asked to go to Indianapolis, were asked there as respected members of the blogging community (which you all are very respected). And those of you that I read on a regular basis are very much bloggers with integrity. Those who think otherwise need to get a life.
    I’m glad you went. I’m glad you blogged about it. And I’m glad to know that some pharmaceutical companies are actually listening to US! We are the ones living with diabetes. And by calling you guys together, they are making the point that they are listening, even if it may not always seem like they are.
    And you ARE valuable. If I wasn’t invited, I’m glad people I respect were. Don’t let stupid people make you angry. We still love all you guys.

  7. July 28, 2009 6:16 PM

    Alison ( Blog Whore)
    GREAT POST and WELL PUT! I agree with what you wrote on every level.
    I plan on signing the pledge and hope to get the super cool badge of honor and integrity for my blog.
    Thanks for putting it out there for all to see!
    Your friend,
    Kelly K
    Blog Tramperella

    PS Have barely twitted today- Can’t wait to read about the Blog Whores- thank good it’s only 140 characters~

  8. Erik permalink
    July 28, 2009 6:29 PM

    Wondefully crafted note as usual😀

    Anyway, I’d hope that such spoil-sports (“why wasn’t IIIIIIII invited”) would take a second look at why they’re blogging in the first place. The juvenile behavior of some of the…non-Roche people?….seems to stem from not a genuine concern about the integrity of the attendees but rather their feeling that they were far too important to pass by. Our society has enough narcissists already; are any really needed in the online diabetes community?

  9. July 28, 2009 7:22 PM

    I blog therefore I whore.

    Whatever.

    Thank you for posting this Allison. Gosh you rock.
    Great post, well said.

    Signed and badge posted.
    Rock on.

  10. July 28, 2009 8:51 PM

    Well stated. Thanks!

    Granted, the name-calling is no fun (traditional media have handed out and endured scorn and censure, deserved and undeserved, for eons), but I admire the passion from all the voices in the D-OC. That passion fuels awareness and positive change, even if there are growing pains.

  11. July 28, 2009 10:42 PM

    awesome post, I love that you are REAL. I find that very admirable!

  12. Andrew permalink
    July 28, 2009 11:06 PM

    Awesome post. Straight forward with common sense.

  13. July 29, 2009 3:14 AM

    Exactly what I would have (should have?) said, Allison. You are wise beyond your years, and I love you!

  14. July 29, 2009 8:19 AM

    I think that blogger outreach trips can be very valuable to let companies know in person what we want or need, whether from the perspective of a parent or that of a patient (or parent of a patient).

    You assume that if they take the time and money to bring someone out, then they will actually listen to what you have to say.

    At Johnson’s Camp Baby we were very vocal that we wanted unscented baby products and we wanted the removal of parabens from their products. At BlogHer another Camp Baby mom showed me a bottle of baby wash– unscented and no parabens!

    Change in action.

    That may seem trivial to some, but Johnson’s is at a price point available to everyone and everyone should be able to afford safe products for their children. (Other brands of “safe” wash are $10-12 a bottle!)

    As a parent of a diabetic child, I would welcome an invitation to one of the drug/supply companies to let them know what I think and need.

    And that doesn’t make me a shill.

    • Andrew permalink
      July 29, 2009 9:54 AM

      Dear Leighann,

      As a new member to the AgaMatrix team, I know we’ll do our best to listen to customer feed back. Any questions or concerns you can reach me at andrew @ agamatrix (dot) com.

  15. July 29, 2009 2:12 PM

    Allison

    I’m afraid I missed the insult tweets, maybe I’ll get some next time.🙂

    Great post. I think we’ve all pointed out that Roche paid for this, and I really don’t see that they expected to profit from it in any direct way. I like the idea of that badge, I need to check it out.

  16. August 9, 2009 12:31 PM

    Well said Allison!

Comments are closed.