One voice, speaking for many

Last week I had the distinct honor of being a member of a discussion panel at a meeting of the Boehringer Ingelheim and Eli Lilly and Company Diabetes Alliance in Connecticut.  This meeting was held to discuss their companies’ use of social media, specifically in the area of type 2 diabetes. 

We all know that “big pharma” is about making money.  They produce medications and devices to help us deal with our various diseases.  Many companies are trying to jump on the social media bandwagon as another way to reach patients and, hopefully, convince them to try their products.  I’m sure you all have your own opinions surrounding this subject but this experience left me feeling hopeful.  Why?  Because they are listening to us.

I found myself sitting in a room filled with approx. 40 people whose jobs are in marketing, public relations, product placement and lord knows what else and I was the lone voice speaking for people with type 2 diabetes.  They want to know what we think, what we want, what we’re looking for when we’re online and who we trust.  I think that’s pretty cool.  Say what you will about big pharma, but it occurs to me that this type of meeting, this type of information seeking, can do nothing but make things better for us, the patients.  Think about it; they could jump head first into social media and put up a website without even giving the patient’s views one thought, but they didn’t do that.  They asked.

I told them that there doesn’t appear to be as big an online presence among the PWD, T2 as there is for T1.  The stigmas that continue to exist about those of us with T2 often make it difficult for folks to come forward.  But just because our voice isn’t as loud doesn’t mean that we aren’t out there seeking help.  T2s need real-world advice on how to live a good life despite diabetes.  We need information on diet changes, increasing exercise, coping with the emotional side of diabetes and how to communicate with our doctors.  On the side, it would be nice to hear about medications that might help us.  Please don’t put it in our face or shove it down our throats.

I urged them to hang out on Twitter and Facebook and listen to what people are saying.  I told them about Twitter chats like DSMA.  If they just come and pay attention to what we say, then they will have a better understanding of how they can help.  The websites need to be user friendly and content rich. Twitter/Facebook accounts need to be manned by real people who are willing to interact in a way that will encourage trust, not just with canned responses. 

PWD are more apt to take advice/information from their peers.  Social media is a unique animal that allows people from all over the world to communicate.  The benefits found via social media for people dealing with chronic conditions are real and a necessary part of coping with said conditions.  I told them that a lot of people don’t trust big pharma and they might have difficulty getting past that. 

It really surprised me that on the heels of participating in this panel I saw that NPR did a piece about this very subject: social media and diabetes.  You can read/listen to the piece here.  Many people in the DOC took exception to the quote by Dr. Jason Bronner that said: “There’s no proof in diabetes that social networking is helpful.”  You can read an open letter to NPR from Diabetes Advocates here.  You may not be able to measure the benefit of social media by comparing A1cs or weight loss or decreases in needed medications, but the benefits are very real indeed.

Many people who are diagnosed with type 2 diabetes are scared.  They need answers and those answers can’t just be “take this pill because this celebrity says it works”.  I hope BI/Lilly gets this right.  I hope they listened.  They seemed to appreciate my input.  I continue to be so pleased to have had this opportunity to speak for the T2 community.  I hope I done good.  ;-) 

Disclaimer: The Boehringer Ingelheim and Eli Lilly and Company Diabetes Alliance paid for my airfare, travel and hotel while I was in Connecticut.  They did not ask me to blog about my experiences.  My views are my own.