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?)
(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.]
- Johnson & Johnson (specifically, the JnJ YouTube channel and Animas)
- WEGO Health (not sucking up - they actually help patients attend conferences)
- Roche (Social Media Summit, Twitter acct with actual faces)
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. ;)