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SXSWi: Friending Pharma.

I was in Austin, TX two weeks ago for the SXSW conference (my first time ever at SXSW, and it was awesome, despite the fact that film and music started the day I left - planning fail on my part), and I had the true honor of speaking on a panel about "Friending Pharma."

The panel was inspired by an interaction between patient advocate Marilyn Mann (advocating on behalf of her daughter, who lives with heterozygous familial hypercholesterolemia) and a PR representative for a pharmaceutical company who engaged in an exchange deemed "creepy" by Marilyn. 

According to an article in Forbes, Marilyn stated, "I think it was creepy for this PR woman to join the Facebook page, lurking there and observing on behalf of her drug company client. The idea of having a drug company planting human interest stories in the press is yucky….a big corporation pulling string behind the scenes. I’m not interested in being used in that way."

Brian Reid, of WCG, was struck by this sentiment of "creepy," submitted a panel to the SXSW panel picker about exploring how, if, and why patients want to interact with Pharma, and taking a look at the "creepy" factor. Which is what brought me, Alicia Staley, Allison Blass, and Michele Polz to the table to talk on that Sunday morning.

"Friending Pharma" panelists: 
Brian Reid, Michele Polz, Allison Blass, Kerri Sparling (me), and Alicia Staley

Despite the fact that it was at 9:30 on a Sunday morning (after the painful "spring ahead" time change), the room was charged with energy and plenty of discussion. Brian has a wonderful recap of the discussion on his Storify, and Allison wrote about her experiences at Diabetes Mine, so I won't roll through all of the already-captured discussion points. 

But there was one moment that I wish was addressed, or at least expanded upon.  And that was when Gigi Peterkin, VP of Digital Health at Edelman, asked the following question:

"How can we move the conversation forward? We get stuck talking about platforms, off-label conversations and AEs. There are processes for dealing with those. As Peter Pitts says 'Pharma guide thyself' with common sense.

I'd like to ask you guys how we move forward. How do we bring the pharma and patient communities together? We have huge events - ePharma, which is attended by a handful of epatients, and ePat Con attended by a smattering of pharma folks. How do we bring you together to figure out how to advance this conversation?"

I think this question is so important, because we've had a lot of stakeholders in the room before (patients, doctors, nurses, Pharma, etc), and the discussions are excellent, but then WHAT HAPPENS?  In the last year or two, I've been part of a lot of panels and discussions, but I'm excited to see the action that comes of these discussions.  Are Pharma companies leaping into the social media space and feeling like they are adding value?  Do patients/consumers/(whatever your preferred term is - "people?") feel like they're being spied on?  Do they care?  Do they want those conversations happening?  Are doctors and nurses (and other health care professionals) reluctant to engage with patients or Pharma? 

In the diabetes community, from my perspective, there has been a lot of progress. Pharma companies, like Roche, are actually making efforts to get to know leaders in the diabetes advocacy space, and not just in a cursory, "I've seen your URL" kind of way. It's not about the companies getting to know the advocates; it's about people getting to know people, and then working together towards a common goal of better health.

The root of Gigi's question keeps running through my mental audio:  "How do we advance this conversation?"  How do we move these discussions from these conferences and meetings and actually start bridging the gaps between the silos?  (Whoa - way too many metaphors there.)  How do we get patients and companies and healthcare professionals and all the other stakeholders actually talking TO one another and engaging in this space in a meaningful way?

Basically, how do we stop being creepy and just start talking?  And once we're talking, how do we then take action?  Real action?  Can all of this social media be used for social good? 

I believe that it can, and I think these discussions are the first steps towards helping more patients become engaged, empowered, and healthier. But there needs to be action, and I think we're finally ready for more of that.

[Disclosure: Animas paid for my travel, lodging, and an honorarium for SXSWi. Per usual, they didn't ask me to talk about them during the speech or blog about them.  Full Animas agreement is outlined here. Any questions?  Email me.]


Speaking as someone who both has diabetes and works in (not so big) pharma that makes diabetes drugs, part of the problem with engaging the patient space is the regulations around talking about meds from a patient perspective. For example, let's say I became a spokesperson for a product my company makes - Symlin. I would be forced to dicuss Symlin only in an an on-label manner, which means I'd have to stick to the verbatim of "I use Symlin as an adjunct therapy with mealtime insulin to control my post-prandial blood sugars." Which is true, but I also use Symlin to supress glucagon after heavy workouts and prevent liver-induced high blood sugars. Other patients use it for weight control. So the point is, patient conversations often veer into the off-label world as we discuss how we ACTUALLY use the drug, not what its indicated for necessarily. Pharma companies have to stick to the regulations, and can only talk about products exactly as they are in the label, which means from the get-go, the conversation is stunted. I think patients are better off discussing things in their own communities. When pharma gets involved, you get things like that awful "branded" Twitter account that Novo did with Levemir and Charlie Kimball. I love Charlie, but let's be real, his "tweets" about "just took Levemir before hitting the racetrack" were contrived and forced - not a real conversation. All of this to say that I'm unsure about what should be done exactly. So this comment is officially not helpful :)

Great post. I particularly like you point that "it's about people getting to know people, and then working together towards a common goal of better health."

I think what is creepy is coming into a space and acting like you are not there. People introduce them selfs and acknowledge those around them even if they mostly listen.

Thank. LY/MI

In terms of pharma and patients talking openly with each other. Like any relationship this takes time to build. Pharma has to learn that we live in the real world, where we may use a CGM sensor for more that the FDA recommended number of days, or trick our pumps into giving super boluses. This isn't to subvert what they've worked on, we do it because we've found it works. Understanding that (and other things) takes time. As we've learned in meeting with Roche for several years, that's not going to happen overnight.

Part of the challenge about building that relationship is that (speaking for myself) I don't have the time or money to attend a lot of pharma or patient related conferences. For Pharma folks it's a full-time career, while I've got diabetes I don't get paid to discuss, proselytize, etc. about it.

If they want to move towards better health they could start by simply making their advertisements and promo materials a more realistic reflection of diabetes. Have a commercial where a PWD still throws a 258 mg/dl after great effort. I think the constant 104 on the meter leads to the public perception that this is easy and if we are out of range or have complications it is all our fault....and I think this myth impacts funding. So ask them to be a partner with us in overcoming the myth that this is so easy.

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