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.]