9 Responses

  1. Scott S
    Scott S January 18, 2011 at 7:00 am | | Reply

    Thanks for the well-considered analysis of these sites. The other item that is puzzling is how some of these efforts work with (or against) other marketing efforts by the same companies. For example, Novo Nordisk funds (at least partially), a successful community with the Juvenile Diabetes Research Foundation (JDRF) called juvenation.org, so it’s curious how the new effort works with this effort, other than JDRF controls it, and it could go to another drug company when the agreement ends. Still, pharma in general is struggling with the whole social media thing anyway, but it seems clear that they will have to realize that it’s a two-way communication channel, and until that happens, most efforts will not succeed. You have hit the nail on the head when you say it might be better to provide recommendations to thorough and thoughtful patient-led websites.

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  3. Leighann of D-Mom Blog
    Leighann of D-Mom Blog January 18, 2011 at 7:44 am | | Reply

    It will be interesting to see how pharma blogs play out given their responsibility to address any statements of adverse effects. It’s also my understanding that under current FDA regulations they cannot have any open text fields or comment boxes on any pages that include advertising (mostly for these reasons).

    These regulations also deter pharma from advertising on and supporting patient owned/written blogs because of the need to have separate pages for commenting. (Or blogs have to disable commenting, which in my opinion no longer qualifies it as a blog.)

    If sites, like that of Sanofi-Aventis, want patient created content, then they would do well to take on paid patient (or caretaker) contributors who write well. Otherwise, they will get what they pay for.

  4. Roselady
    Roselady January 18, 2011 at 9:23 am | | Reply

    I love that you examined these things. I’m amazed period at how much social media is driving our lives. Fascinated how pharma companies are trying to get involved. Obviously, they’re smart to work their way in to online diabetes conversations, but sounds like they still have to do a lot of work to succeed. I’m sure someone will get it down, though…

  5. diabetict1
    diabetict1 January 18, 2011 at 11:33 am | | Reply

    From DiscussDiabetes:

    1) All comments must be previewed before posting. Please don’t let this deter you from commenting, but understand there is a review process that may take hours, or even days. While some messages may not be posted, we are still listening and encourage you to continue sharing.

    -of all the online forums for diabetes, why would I go to this one to discuss anything?

  6. Sara
    Sara January 18, 2011 at 8:08 pm | | Reply

    “They want guest posts to make their site engaging — so we’re all supposed to write for them for free? It’s not that I want them to pay us to contribute, either. It’s just that they ought to be bringing valuable content to us, and not the other way around, no?”

    I feel like this is occurring more and more often in social media forums these days.

  7. Ann B
    Ann B January 19, 2011 at 6:59 am | | Reply

    I feel you left out some important perspective! Social media is meant to be a venue for sharing information, whether it be free or paid.

    Currently, patient sites are all but hands off for pharma (other than to advertise) due to regulatory and legal issues! Last year, I was participating on a patient panel about how pharma could be better involved and woman told her story of having reached out to patients through a patient portal and had her hand seriously slapped by FDA! Her company is now afraid. By creating their own patient centric sites they can control this problem.

    It will take some time for Pharma to change the current rules for patient relationships and patients have to be better stewards for showing, all the powers that make up the rules, why change is in our best interest!

    (Scott) As for NovoNordisk and Juvenation, that was a grant and the site is run by JDRF. Novo has no input as to how it is run, nor the content. It basically was a big check to get the ball rolling and Novo receives recognition. It’s separate from cornerstone.

    And last, your statement that pharma should engage with patients sites only! That’s not visionary, that’s just self serving! Think of it this way, we have about 20 years in which to face the huge wave of patients, not enough doctors, or CDEs! It’s already scary! Try sitting on the Q&A area of places like Healthcentral. There are a lot of lost d people, how do we propose to help them?

    If these efforts by pharma are a first generation to try to breakout of the current pharma/pt mold, they have my support!

  8. AmyT
    AmyT January 20, 2011 at 7:32 am | | Reply

    @Ann B – I disagree. I think Allison said it well here.

    First off, Pharma is famously self-serving, for obvious reasons. You may not know that I also write for HealthCentral, and do a lot of Q&A at DiabeticConnect.com. It is sites like that where patients get the most value! Not some marketing sites disguised as patient resources — because to date, most of the latter are not very useful.

  9. Scott K. Johnson
    Scott K. Johnson February 15, 2011 at 8:06 pm | | Reply

    like everything else, only time will tell.

    These sites also need to “feel” right in order for people to hang around, and they already have a pretty big stigma to overcome by being “big pharma.”

    But who knows – maybe some good will come from this movement. I’m willing to watch and see.

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