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23 Responses

  1. tmana
    tmana July 3, 2012 at 4:38 am | | Reply

    The thing we need to watch out for is the siloing of PWD by each distinct community, whether that community be dLife, TuD, DD, Diabetic Rockstar, Juvenation, the ADA, or any of the corporate-owned “communities”. Once we restrict activity to one community, all of the others lose out. And adding value to one community often means offering exclusive content, which means restricting participant activity to that community alone.

    Additionally, unless there are SM content managers who actively syndicate information and conversations between communities, the communities lose out by missing large parts of the potential conversation.

    That said, the more separate communities — or the more content — the more time any individual PWD, SMM, or other individual must spend in collecting, reading, and/or curating that content. It can overwhelm the average PWD (of which most of us are not)

    1. Manny Hernandez (@askmanny)
      Manny Hernandez (@askmanny) July 12, 2012 at 10:38 am | | Reply

      Tmana,
      I am not sure people focused on a single community, reading a single blog (or only a handful among the hundreds of d-blogs out there), or solely tweeting about their life with diabetes means that they are missing out on anything. The DOC experience has evolved into different things for different people.

      The goal, IMHO, is not to be in on all places the DOC has to offer, but to make the most of your time on it, ultimately living a healthier and more fulfilling life with diabetes, in spite of the ups and downs that this chronic diseases comes with.

      My two cents.

  2. fromtheheart
    fromtheheart July 3, 2012 at 8:48 am | | Reply

    While I’m grateful for the PWD community’s input, I wonder if pharma is also incorporating those parents who care for children with diabetes who choose products and manage their children’s type 1 diabetes. I read here and often about the PWD and obviously what a wonderful community to retain first hand knowledge. The parents of CWD might be an untapped gold mine for pharma and for improving the lives of all people with type 1 also imho.

    1. Leighann of D-Mom Blog
      Leighann of D-Mom Blog July 12, 2012 at 6:10 pm | | Reply

      fromtheheart-
      I am one of the parents of CWD’s that is often invited to pharma events and I often receive outreach from companies about new products and initiatives. I recently wrote a piece for Disney Family.com (which is sponsored by Lilly Diabetes). And my book Kids First, Diabetes Second is in stores this summer. I think that parents of children with diabetes who are active in the online community ARE being included in outreach and they are trying to learn from our experiences as well as find ways to market to us in meaningful ways (for example, Medtronic’s new Lenny Build-a-Bear dolls and Lilly’s line of books for kids and tweens which are co-branded with Disney). While parents of CWD’s are often included in outreach and events by pharma, they have largely been in the minority. But our presence is increasing for sure. The attendee list for Roche’s upcoming event includes the addition of several more parents. And trust me, us parents speak our minds and give suggestions as to how the care of our children can be improved!
      -Leighann

      1. John Mack (@pharmaguy)
        John Mack (@pharmaguy) July 13, 2012 at 4:43 am | | Reply

        Leigham,

        You mention that Disney Family.com is “sponsored by Lilly Diabetes.” Can you point me to the sponsorship notice on that site? I don’t see anything about it. Or do you mean that Lilly Diabetes is just serving up banner ads on the site?

        John

        1. Leighann of D-Mom Blog
          Leighann of D-Mom Blog July 13, 2012 at 9:36 am |

          Lilly Diabetes sponsors the site, they don’t just purchase advertising. If you click on any of the individual posts (family.go.com/parenting/pkg-type-1-diabetes) you will see in the upper right corner the red Lilly logo and it says “Sponsored by Lilly Diabetes.” It’s my understanding that Disney and Lilly develop the content together.

      2. John Mack (@pharmaguy)
        John Mack (@pharmaguy) July 13, 2012 at 10:24 am | | Reply

        OK, Lilly sponsors ONLY the “Type I Diabetes” section under “Parenting,” not the entire site — most of which is chuck full of sugary food ads and recipes that are not healthy for normal children, let alone CWD! Luckily, these ads are not served up alongside the sponsored content.

  3. John Mack (@pharmaguy)
    John Mack (@pharmaguy) July 3, 2012 at 8:52 am | | Reply

    It concerns me that pharmaceutical companies are copying what PWD are doing online and even specifically using (pirating?) “Diabetes doesn’t define me” line from Six Until Me. Have they paid for this? If so, has Six Until Me revealed this? The transparency issue is what concerns me when pharma companies work with online PWD leaders.

    1. Manny Hernandez (@askmanny)
      Manny Hernandez (@askmanny) July 12, 2012 at 10:38 am | | Reply

      Have you made Kerri Sparling aware of this, John?

      1. Kerri.
        Kerri. July 12, 2012 at 12:03 pm | | Reply

        Kerri Sparling is aware. :) And I don’t have anything to disclose; I wasn’t involved in the Sanofi diabetes dictionary thing at all.

  4. Laura Kolodjeski
    Laura Kolodjeski July 3, 2012 at 1:37 pm | | Reply

    Hey Mike,

    Thanks again for the opportunity to participate in this conversation. It really is amazing to see how the DOC has grown.

    As I shared in our original correspondence, Sanofi US Diabetes is appreciative of the fact that we’ve been included in the online conversation. Our goal is to listen closely to the diabetes community and identify ways to contribute to and complement the conversation in a meaningful manner. We also feel that by sharing the stories of DOC members we learn more each day about living life with diabetes and how we may bring value beyond our products alone. As always, we’re open to feedback and look forward to hearing input from the community.

    For anyone who would like to contact us, please feel free to reach out via email at usdiabetes@sanofi.us.

    Best, Laura K.

  5. kathy
    kathy July 3, 2012 at 2:42 pm | | Reply

    Thanks for this upbeat and informative story of the DOC history. I find the DOC to be a valuable and reassuring tool that I use almost daily. I only wish that more of us will discover this amazing resource. In the real world, I rarely meet a Type 1 who is even aware of its existence.

  6. Tim
    Tim July 3, 2012 at 10:09 pm | | Reply

    I honestly do not personally know a single T1 diabetic in my church, at work or in any of the music groups I play in and I live in East Kirkland (East Seattle area). My only place to interact with and commiserate with T1s IS the DOC.

    It’s been wonderful to find a place where people know what it is to live with and struggle to control this disease. Thanks to everyone at DiabetesMine, Alexis at I Run On Insulin and everyone who takes the time to ask and answer questions that give insight into diabetes and life.

  7. Melster
    Melster July 4, 2012 at 11:42 am | | Reply

    Your timing of this post is great. I am actually putting together a few words about social media for a talk I have coming up. I will be sharing some very general information (real 50,00 ft level) about the DOC with mostly primary care providers with an interest in diabetes. I would like to refer them to your blog as a nice summary of where we are and where things may be headed.

    Keep up the great work and support for PWD.

  8. Minnesota Nice
    Minnesota Nice July 5, 2012 at 2:47 pm | | Reply

    Unfortunately, the DOC has grown into a big popularity contest that makes me feel entirely sad. Gone are the days when everyone’s input was valued and respected. What remains is a “circle the wagons” group of spotlight seekers who look down at the rest of us with an arrogant attitude.

    1. Manny Hernandez (@askmanny)
      Manny Hernandez (@askmanny) July 12, 2012 at 10:43 am | | Reply

      Amiga,
      One thing that happens when communities grow is they start mimicking more and more the world at large. This means there will be people who play in the sandbox, people who are helpful, mindful and respectful, and people who are simply focused on their own agenda and don’t care about others much…

      I just don’t believe the entire DOC is a big popularity contest. I have met some of the most extraordinary people ever through the DOC, you being one of them! ;)

      Take care.

  9. Ruth Z Deming
    Ruth Z Deming July 6, 2012 at 6:06 pm | | Reply

    Great post, Mike! I always know it’s Friday when my favorite online newsletter appears. I compare the interactive relationship of PWDs and Pharma with my own bipolar disorder where Pharma is constantly getting in trouble and embarrassing all of us w/bipolar or depression as they hide important details of studies, promote drugs off-label, all in the name of greed. Their unchecked, unethical behavior costs many people their lives!

    I got insulin-dependent diabetes when I got a kidney tplant last year and the antirejection meds caused diabetes. Am adapting slowly and DiabetesMine has made the journey so much easier and I know I am not alone.

  10. ruth z deming
    ruth z deming July 6, 2012 at 7:00 pm | | Reply

    forgot to mention the reason i got a kidney tplant was b/c i took the drug lithium for bipolar d/o for 16 yrs and it ruined my kidneys. i know a dozen people like me – in their 50s and 60s – who have either had tplants or are on dialysis.

  11. Tracy Selle
    Tracy Selle July 7, 2012 at 12:55 pm | | Reply

    You’ve written another great post.

    (FYI, I’ve been way behind on blogging and only recently discovered your old blog is no more and you’ve moved on. Good for you!)

    This post hits on somethings I’ve been thinking of recently and plan to blog on.

    I think the DOC is great. Actually a huge blessing for people like me….after my son was diagnosed. When I have questions…need encouragement…the DOC is there.

    BUT ….I wish we would step out of the box. Try to educate people who don’t know about Type 1.

    I think that’s why everyone knows about the color pink. They moved outside the cancer community to reach people who don’t know about cancer.

    The DOC is a blessing to many (myself included!) but does anyone outside of the DOC know about it? Isn’t that important? I think we need to do a better job of reaching the general public.

  12. Christina
    Christina July 12, 2012 at 2:05 pm | | Reply

    I arrived late – took me over 5 years after my first child’s diagnosis to find the DOC. I have found EVERYONE to be welcoming, kind, supportive and inclusive. Prior to finding the DOC on twitter I would spend hours a week searching for the latest and greatest technology, studies, trials, etc. I often became discouraged and likely missed out or learned late about new tech or better ways to manage diabetes for my kids. Having pharma involved doesn’t bother me – although like I said Im new to the DOC and might not understand the risks of involving both the patients and the companies that want to sell us stuff participating in free flowing conversations. Maybe ignorance is bliss – I just love that each day DOCers share articles, technology, ideas and of course support. now I don’t feel like Im always bringing up the rear – I feel like I am gaining ground and my kids, my family and I am better for it. The joy I experience in general aspects of my life have increased greatly since I found a community of people that understand “dd high – inclusion found – new site -corrected – rechk in 2 hrs – who’s up?” There is power in that. Thanks Mike!

    1. Leighann of D-Mom Blog
      Leighann of D-Mom Blog July 13, 2012 at 4:27 am | | Reply

      Exactly, Christina! I’m one of those parents who understands that cryptic sentence and is likely also up in the middle of the night.

      Just added you to my feed reader :)

      -Leighann

  13. Hope Warshaw
    Hope Warshaw July 13, 2012 at 6:24 am | | Reply

    Mike –
    Just want to say THANKS for a moving and beautifully written piece recapping the DOC’s growth and growing pains. You all are building such a rich and wonderful resource. As a diabetes educator who appreciates and promotes the value of SUPPORT, I encourage the DOC to look for ways to build among the community of people with diabetes. I’d love to see MUCH MORE outreach to more people with type 1, caregivers, people with type 2, prediabetes, etc. Unfortunately there are millions of people who would benefit from a support network or two!

    Thanks again! Keep up the great work!
    Hope

    Thanks for ALL you do!
    Hope

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