EndoGoddess

EndoGoddess

Sunday, August 5, 2012

Roche Diabetes Social Media Summit 2012



I recently returned home from several fun-filled days at the Roche Diabetes Social Media Summit in Indianapolis. Roche pioneered the idea of an open exchange between pharma and patient advocates first in 2009. Roche is a company that knows the power of dialogue with customers and strives to make it happen with the now 4th Annual Roche Social Media Summit. While this effort obviously benefits Roche's bottom line, it also benefits patients in getting products that are needed and wanted in order to live a vibrant and 'vogue-filled' life with diabetes (as in the picture above).

Here are a few highlights:


We started out by sharing fellowship and fun with friends and other diabetes warriors like Kerri Sparling of the popular blog sixuntilme.com.


We were then inspired by Josh Bliell, spokesperson for the Indianapolis Colts, who shared his story of recovery from a double amputation while in combat in Iraq. His recover was difficult, but utimately he found the inspiration to take his first steps toward walking...and healing. "I met celebrities and politicians while hospitalized but it was another solider with the same injury that inspired me to take my first step". He concluded with a message that our voices as diabetes advocates are powerful for such healing.


We then toured Roche headquarters in Indianapolis where we saw the process involved in Accu-check glucose strip manufacturing and product testing. We also got to speak with Roche executives as to the future of diabetes technology and innovations. Some of the things that we got to see were proprietary so I cannot write about the specifics. However, it was clear from the discussion that data integration between devices is a common goal for the future shared by both advocates and pharma executives. As an app developer and technology entrepreneur focused on the initial steps to glucose meter and app data integration within the Endo App Products (stay tuned for new launch details in the coming months), I was happy to hear that we are all on the same page. This makes the goal of data integration which is VERY much needed now VERY much possible.


We then attended the Indianapolis Indians baseball game where the mascot (a bear I think) was very friendly! I am wearing one of my Camp Sweeney diabetes camp tshirts, easily one of the most influential experiences in my diabetes education. In fact, camp was my first exposure to the power and healing that comes from interacting with the diabetes community. I guess you can say that camp is the original offline version of the DOC (diabetes online community)! Tales of diabetes camp were discussed often throughout the event by both patient advocates and Roche employees.


While at the baseball game, we all got to experience a first with friend and diabetes advocate, Kelly Kunik, as noted in the above video: her first tasting of cotton candy! She blogged about how dispelling myths about diabetes by eating cotton candy and doing so with other advocates without having to worry about ignorance or judgement was a special experience in itself: http://diabetesaliciousness.blogspot.com/2012/08/the-cotton-candy-experience.html


On the last day, we got to meet Steve Richert. Steve was diagnosed with type 1 diabetes when he was 16 years old but never let it stop him from doing the things he loves, such as mountain climbing. Living Vertical is a fundraising project and documentary that he started earlier this year to raise awareness for living life with diabetes without boundaries. It is his dream to one day be a guide for those with diabetes that desires to climb mountains. "Climbing mountains is do-able for anyone, the limitations are only in your head, it can be done." He left us with the message that in mountain climbing and in diabetes, nothing is impossible.



In conclusion, while initially the summit inspired listening by a pharma company to patient advocates, I learned that pharma needs patient advocates to listen to their concerns too in order for us both to achieve our common goal of making life with diabetes easier. Roche executives we met agreed with patient advocates that the rate of technology progress is too slow in the United States as compared to Europe where products are released 4 years earlier due to less regulation hurdles. Pharma needs the patient voice and their concerns to not only circulate via social media but to also enter the communitcation channels used by the regulatory bodies that impede diabetes innovation while also maintaining safety. Suggestions for action to be done by advocates: FDA consumer comment submission, participation, attendance, and joining forces with diabetes advocacy organizations already working on technology advocacy. It was unanimous amongst the group that next year's summit be in Washington DC and related to furthering this 'advocacy and democracy' mission...translating the "D" in diabetes, the DOC, and DSMA to democracy for patients! Many thanks to Roche for being a partner with patients. :)



A complete list of the diabetes patient advocates in attendance at Roche Diabetes Social Media Summit 2012 with their twitter handles and blogs is as follows:

Dr. Jen Dyer (@EndoGoddess), http://endogoddess.blogspot.com/
Kerri Sparling (@sixuntilme), http://sixuntilme.com/
Kelly Kunik (@diabetesalish), http://diabetesaliciousness.blogspot.com/
Leighann Calentine (@dmomblog), http://www.d-mom.com/
Michael Durbin (@mydiabeticheart), http://www.mydiabeticheart.com/
Jeffrey Hitchcock (@cwdiabetes), http://www.childrenwithdiabetes.com/
Michael Hoskins (@MHoskins2179), http://www.diabetesmine.com/
Cherise Shockley (@sweetercherise, @diabetessocmed), http://diabetessocmed.com/
Sara Nicastro (@saraknic), http://momentsofwonderful.com/
Brandy Barnes (@diabetessisters), http://www.diabetessisters.org
Soctt Benner (@ArdensDay), http://www.ardensday.com/
Kitty Castellini (@DiabetesLiving), http://diabeteslivingtoday.com/
Kelly Close (@diaTribe), http://www.diatribe.us/
Stacey Divone (@PortblPancGrl), http://portablepancreasgirl.com/
Bea Dominguez (@crankypancreas), http://crankypancreas.com/
Bennet Dunlap (@BadShoe), http://www.ydmv.net/
David Edelman (@diabetesdaily), http://www.diabetesdaily.com/
Rachel Foster (@RachelT2D), http://www.talesofrachel.com/
Karen Graffeo (@KarenBittrSweet), http://www.bittersweetdiabetes.com/
Riva Greenberg (@diabetesmyths), http://www.huffingtonpost.com/riva-greenberg/
Ronald Machio (@RonniegregoryM), http://thepoordiabetic.com/
Jaimie Hernandez (@JaimieDOC), http://www.tudiabetes.org/profile/JaimieH
Manny Hernandez (@askmanny, @diabetesHF), http://www.diabeteshandsfoundation.org/
Scott Johnson (@scottkjohnson), http://scottsdiabetes.com/
Mike Lawson (@mrmikelawson), http://www.youtube.com/user/MrMikeLawson
Robert Pedersen (@rpederse), http://tminustwo.net/
Cara Richardson (@cerichards21), http://countrygirldiabetic.blogspot.com/
Wendy Rose (@MrsCandyHearts), http://www.candyheartsblog.com/
George Simmons (@ninjabetic), http://www.ninjabetic.com/
Christopher Snider (@iam_spartacus), http://about.me/christopherasnider
Christopher Stocker (@lifeofadiabetic), http://thelifeofadiabetic.com/
Scott Strumello (@sstrumello), http://blog.sstrumello.com/
Lee Ann Thill (@leeannthill), http://www.thebuttercompartment.com/
Kimberly Vlasnik (@txtngmypancreas), http://www.textingmypancreas.com/



(*Disclaimer: Roche paid for my travel expenses to this event as a diabetes patient advocate for which I am very grateful. All opinions are my own. As I am not currently active in clinical practice at this time, there are no related practitioner policy violations.)

 

20 comments:

  1. I was so glad to get the chance to meet you! :)

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  2. I was thrilled to finally get to meet you too, and loved that you were an attendee this year... who rocked that Camp Sweeney shirt like no one's business! Your perspectives added depth to the discussion, which I greatly appreciated. I'd like to second your thanks to Roche for partnering and supporting patients through the summit. The summits have promoted relationship-building between us and pharma, us and healthcare providers, us and various diabetes non-profits, and us with each other. It's been remarkable to observe and participate in the process, and I'm always so honored to be part of it.

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  3. Thank you for your kind words Lee Ann. Congrats on your recent Diabetes Hands Foundation Award, very well deserved! It was SUCH a pleasure to meet you as you have been on my 'need to meet IRL' list for a long time!! :)

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  4. I learned that pharma needs patient advocates to listen to their concerns too in order for us both to achieve our common goal of making life with diabetes easier

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  5. Thank you Jennifer! It was so great to see you again. The last time had been Blogworld 2010!

    This is a great summary, and I love the pictures.

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  6. It was amazing meeting you in IRL ( in real life) and I love your post - awesome pics & great summary!
    Thanks for being such a great ENDOGODDESS and for continuing to inspire, teach, care and advocate for all of us living the diabetes life!
    Kelly K

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  9. I learned that pharma needs patient advocates to listen to their concerns too in order for us both to achieve our common goal of making life with diabetes easier

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