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The Big, Bad Wolf.

Yesterday, I was up in Boston proper for a meeting of health activists from the WEGO Health community, brought together as part of a panel of patients who were willing to share their perspectives with Pharma.  My fellow panelists - Alicia Staley, Rosalind Jaffe, and the diabetes community's own Karen of Bitter-Sweet Diabetes - and I talked with a group of representatives from Pharma who had questions about getting involved in the social media space.  (Did you know Pharma wants "in" on the social media space?  Can you tell?)

The WEGO Health Socialpalooza panelists and moderators
Kerri Sparling, Rosalind Jaffe, Jack Barrette, Karen, Alicia Staley, and Bob Brooks. 
(This is the happy photo. And because they all humor me, here's the serious one and the goofy one.)

The discussions were extensive, and we talked openly about what we, as patients, thought Pharma was doing "right" and then our opinions on what was missing from the social equation.  The WEGO Health moderators provided a few questions to the panelists prior to the panel, and my answers were sent off a few days earlier, while BSparl was taking a nap. (Which means I was too exhausted to craft up fancy answers and instead blurted out knee-jerk responses, which were included verbatim in the slides.  Which makes me reconsider using the "draft" option of my email to preserve mine and everyone else's sanity.) 

Here are the questions we were sent, and my answers:

What rules of the road should companies follow when they engage your communities online?

  • Always be authentic (aka don't be a big, fat liar)
  • Do not judge the actions of online communities (see also:  "Diabetes Police*")
  • Contribute to the conversation, don't just try to sell us stuff
  • Don't fear the blogosphere:  Show us your face!

What health or pharma company social media efforts are resonating with your community online? [I don't speak for "the community," so I instead listed efforts that resonated for me, personally.]

What would you tell companies to encourage them to support your communities online?

You need us.  In so many ways.  So come talk to us.  We want to hear from you.  Also, bring cookies (And with this slide, the WEGO crew had included a photo of some lovely chocolate chip cookies.  I appreciate being humored.  I also love cookies.)

Pharma isn't the big, bad wolf.  The industry as a whole gets a bad rap because there are some dodgy apples in the bunch that ruin Pharma's overall image.  I think that same principle applies to just about everything (there are always jerkfaces in certain groups).  I think that Pharma companies attending events in effort to engage with patients is a good thing. 

"But they only want to profit off our disease.  They want to tap us because they make money off us." 

Good point.  But while that is true on some levels, it's also true that just having them in the room with us is a start.  Because if they're in the room, they can hear us. And if they hear us, they just may start to listen.  

And damnit, there is a chance of cookies.

*  I hate being policed, especially by people who don't know me.  I can take criticism well, and constructively, but I do realize there is a certain risk that comes with putting my personal health information out there for all to see and analyze.  That kind of disclosure opens me up to a lot of scrutiny and judgment.  Part of what I wanted to convey to the attendees of this discussion was that judging people within these communities is a crap idea.  Unless they know what it's like to live with these illnesses, don't just pop in and make disease management suggestions or judgments.  And definitely don't jump in and try to link to your products.  Support and accurate information go a very long way in making a difference in our health and lives.  Don't rag on the diabetic who clamors for cookies.  ;)

Comments

Thanks for writing this! It's interesting to hear about pharma's voyages into social media from someone who's one of the gatekeepers.

Cookies for everyone!

They better not rag on you for the cookie lust Keri! Well stated...many of these companies would actually benefit to learn how PWDs really live, how they "really" use their products...maybe then they can continue to improve upon product lines to better suit the population...until a cure is found...deep sigh...someday.

I honestly don't know how to feel about pharma wanting "in" on social networks around online health communities. I love the idea of online health communities having people in them who don't have underlying motives (re: other patients, who are there to understand and be understood), I think adding industry changes the game. Though I guess it could be argued that pharma, like health sites (dlife, diabetesdaily, etc) are just additional resource providers. But it still feels strange to me.

Also, how is it you do goofy better than anyone in that photo?

I don't know how pharma companies work, but I do know one pharmacist who is a friend/former boss/neighbor. We were talking one day and she said that as pharmacists, us diabetics are the most difficult patients because our needs are constantly changing and the pharmacy system isn't set up to accomodate us. So even there are so many of us, the "system" looks at us like a minority. So I think that if they got "in" on the social media and everything else (including cookies!) maybe they could learn and someday it will be better suited for us patients with diabetes.

It does feel strange to be getting involved in more of these types of conversations, but I still think that getting to know each other is not necessarily a bad thing. They need us, we need them. Thank goodness there are people out there working to bring us some better tools, right?

But, as you have said, these conversations need to be done the right way. No people being bought or sold, just true, honest, transparent communication. We can help each other.

And after hearing so much about Jack while hanging out with you and Bob, I'm glad to have a face to go with the name!

Nice to virtually meet you Jack! :-)

Whether anyone likes it or not, the social media is the new frontier/target for any company and that includes pharmaceuticals.

Yup, I knew the "goofy" picture would end up here - or at least linked here. I smile every time I look at it!! :)

It really was wonderful to get to share our input and opinions with pharma reps. I think interacting with them in Social Media can be a good thing, and conversations like the one we had on Tuesday can help make sure everyone is on the same page and that our interactions get done right. (And maybe they will bring cookies!!)

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