Last month I wrote about the rising impact of health social media. Even suggesting it may be making doctors irrelevant. While health care providers appear slow to realize this-and take advantage of social media--I know one pharmaceutical company that is not. Roche.
I just returned from Roche's second annual social media summit. Last year 29 of us diabetes bloggers and broadcasters were flown to Roche HQ in Indianapolis for an open exchange. Roche was putting its toe in the water. Wanting to learn from us how to enter social media as a good "citizen." We were given carte blanche to have our say about big pharma.
A day's dialogue resulted in Roche hearing our needs and wants as patients, and we delivered a Roche-map for "Social Media Do's and Don'ts." For instance, Do: Keep It Real, Educate and Earn Trust. Don't: Spam, Sell or Self-Promote.
A week ago we were invited back for a second summit. This time the group was larger, 37 bloggers and broadcasters, and the meeting was designed largely for our benefit. Of course I'm of the mind either way you slant it, a pharma better understanding the experience of living with diabetes and doing something with that knowledge can only benefit all concerned.
The meeting kicked off with Lisa Huse, Roche Director of Strategic Initiatives/Diabetes Care, giving a recap of four initiatives Roche enacted based on our recommendations last year:
1) "Keep It Real" - Display the real experience of diabetes, the real blood sugar numbers we get, and teach patients what to do with them. ACCU-CHECK's "Testing in Pairs" and "360" View are two such tools.
3) Advocate For the Diabetes Community - That's happening through the Diabetes Care Project: A coalition of like-minded organizations improving care for those living with diabetes.
4) Help the Diabetes Community Amplify Its Voice - Clearly evident through this year's exchange between us and the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE).
And that's what the rest of the meeting consisted of--an open exchange with representatives from the ADA and AADE.
The ADA was invested. They showed up with six representatives including David Kendall, Chief Scientific & Medical Officer. They were extremely open about the need and desire to turn their battleship organization around to be more representative of, and better serve, patients' needs including type 1s. And, they agreed there's a need for more transparency. Kendall cited the ADA's "Stop Diabetes" campaign as a first step in becoming more patient-centric, and each participant felt a small bridge had been crossed.
We shared with the AADE our concern that there are not enough diabetes educators for the growing number of patients. For the current 26 million Americans with diabetes and 60 million with pre-diabetes, there are only 15,000 educators nationwide. And they are not growing in number but decreasing. We asked the AADE to advocate for more, and more direct, routes to becoming a diabetes educator. We asked about a track for patient-experts to become educators in some recognizable fashion. And we vowed to support their work, and their members, through the online community.
The day's meeting ended with dinner and games and Roche donating $2,250 worth of game winnings, at the winners' request, to five diabetes organizations. You could also say the meeting began short of a year ago, through the quarterly phone calls Roche held with us in-between these two annual meetings.
I am impressed by Roche, and any other company that knows the power of dialogue with customers and strives to make it happen. While we can assume this benefits Roche's bottom line, it also benefits patients in getting products we need and want.
I also experience the Roche team as heartfelt. At the end of Lisa Huse's talk she told us that during this past year following our blogs and having her ear on the ground with us, she's come to understand diabetes in a way she never did her first 11 years with the company. Isn't that what we want all companies to say?
So as I finish this article, tens of diabetes bloggers are tweeting and blogging and sending each others' posts about the summit around the internet. And, really, what could be bad about that for Roche, and for us?
Below are all the bloggers and broadcasters who attended.
Karmel Allison, A Sweet Life
Christel Marchand Aprigliano, dLife
Brandy Barnes, Diabetes Sisters
Rachel Baumgartel, Dueling Diabetes on dLife
Gretchen Becker, Wildly Fluctuating
Chris Bishop, The Big D
Sarah Jane Blacksher, Adventures of Diabolical Diabetty
Allison Blass, Lemonade Life
Leighann Calentine, D-Mom Blog
Kitty Castellini, Diabetes Living Today
Charlie Cherry, Diabetes Power Show
Kelly Close, CloseConcerns
Beatriz Dominquez, Betizuka
Wil Dubois, Life After Dx: The Guardian Chronicles
Bennet Dunlap, Your Diabetes May Vary
David Edelman, DiabetesDaily
Elizabeth Edelman, DiabetesDaily
Bernard Farrell, Diabetes Technology
Bob Fenton, Exploring Diabetes Type 2
Riva Greenberg, Diabetes Stories
Manny Hernandez, TuDiabetes
Jeff Hitchcock, Children with Diabetes
Michael Hoskins, The Diabetic's Corner Booth
Scott Johnson, Scott's Diabetes Journal
Scott King, Diabetes Health
Sara Knicks, Diabetes Daily
Kelly Kunik, Diabetesaliciousness
Crystal Lane, PumpedUP
Dana Lewis, Healthcare Communications & Social Media
David Mendosa, Mendosa.com
Cherise Shockley, Diabetic_Iz_Me
George Simmons, The B.A.D. Blog
Chris Stocker, The Life of a Diabetic
Scott Strumello, Scott's Web Log
Kerri Morrone Sparling, SixUntilMe
Amy Tenderich, Diabetes Mine
Lee Ann Thill, The Butter Compartment
Christopher Thomas Polack, Diabetic Rockstar
Ginger Vieira, Living in Progress
In full disclosure all expenses were paid for by Roche for the social media summit. I was not asked to write this article.
Follow Riva Greenberg on Twitter: www.twitter.com/diabetesmyths