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The Proof is in the People.

diaTribe - the littlest one.Happy New Year!!  The 50th issue of diaTribe came out last night, with a really amazing letter from editor Kelly Close, insight from the advisory board, and my response to the NPR article that came out in early December.

"Earlier this month, I was part of a piece put together on NPR about diabetes and social media, which focused on how pharma and patients interact in this medium. The NPR article referenced a quote from Dr. Jason Bronner that ruffled feathers not only in the diabetes online community, but in many other patient communities across the web. 
'But what are patients getting out of social media? It's unclear whether connecting online is helpful for adults treating diabetes. "There's no proof in diabetes that social networking is helpful," says Jason Bronner, a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes.'
I wish the focus of that NPR piece had been on the community.  Because even though Big Pharma (and their medical device friends) can be an important group for patients to be interacting with in efforts to influence new product development, etc., the most important interaction is between patients and … patients. The diabetes online community may serve many communication purposes, but at the core, it’s built for connecting people to people.

What are patients getting out of social media?  I hear this question being raised by researchers and healthcare professionals and all kinds of voices across the caregiver spectrum, and I am filled with frustration at the lack of data that proves the positive impact of patients connecting with other patients online."

Please check out the rest of this article, with quotes from fellow PWD voices - including Manny Hernandez, George Simmons, and Briley Boisvert - over at diaTribe. (Also, if you aren't subscribed to diaTribe yet, 2013 is a good time to start!  You can sign up to receive the newsletter here.)

Comments

Thanks for the write up, Kerri. I agree that the benefit of social media is connecting people with people, and that can and often does help us PWDs do better. That is something Bonner does realize, and his quotes were slightly out of context in that NPR story. He believes social media does work for PWDs, and his research is trying to determine what kind and how it helps certain PWDs. I wrote about that in an update on Storify: http://storify.com/DiabetesMine/response-to-npr-story-on-diabetes-and-social-media

Great response Kerri. We may not have evidence yet regarding the positive impact of patients connecting with other patients via social media, but of course there is research out there demonstrating the importance of social supports for mood regulation, coping mechanisms etc. Plus it is just common sense! The online support and information is huge for people who otherwise might not know anyone living with their condition.

Hi Keri,
I find the complaint regarding your comments on NPR regarding the social media impact for diabetics to be poor at best. So, my question is this: Have you ever been an observer during an office visit between a doctor and a child, youth and a mature adult. The lack of clarity, the missed opportunities to share information, questions and help with the language of the doctor from the patient's perspective, their challenges and possible changes can be totally missed by the patient AND the doctor. Communications require clarity of the message and receipt by the patient. What social media has accomplished is the fact that individuals can share their personal challenges and have a possible re-enforcement of the origianl message from the doctor and or where to go to be sure that this missed information was the best choice for the health of the patient. Knowledge comes first followed with an understanding of the times and the two are the building blocks for wisdom to live a happy, healthy and productive "normal" life for a diabetic individual. Here, Here.... stay the course!
AS always have a great day.
Dan

It's nice to read about others who communicate about my disease. I'm a type two diabetic who takes 4 insulin shots per day. Not fun at all! I hate it! I want to lose weight so I can be taken off the insulin.

I hope you enjoy the New Year!

Off topic but the title of this post makes me crave pudding. Thanks a lot... ;)

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